The CERP and What it Does 01 — EATING THE EVERGLADES

        Those Gentle Readers who keep up with what is happening in south Florida legal circles may be aware that in 2000 the Federal and State passed legislation that officially created the CERP[1] was trumpeted by members of the Clinton and several Bush administrations (President of the U.S. and Governor of Florida) and various Federal and State politicians as the rescue mission that finally would save the Everglades. However, attached to that rescue mission was an initial cost of $8 billion. And counting, until in summer 2011 the number stands at about $13.5 billion, and that’s far from what the total will actually be.

        To date (summer 2011), the Federal government has appropriated $755 million through Fiscal Year 2011 for CERP since the WRDA-2000 was passed compared with over $2.1 billion appropriated by the State. So, the State is doing it’s share while the feds lag far behind.

        Based on specific recommendations made by the Corps of Engineers, Congress proclaimed with magisterial gravitas: “The basic problem of this area is, therefore, to restore the natural balance between soil and water in this area in so far as possible by establishing protective works, controls, and procedures for conservation and use of water and land” (key words have been highlighted by the author). It should be painfully obvious to anyone with a functioning brain that the Everglades had been royally screwed since before the 1920s by the uninformed, heavy-handed meddling of the Corps of Engineers. Therefore, for Congress, the very best solution was to turn the restoration assignment over to the Corps for more uninformed, heavy-handed meddling. Which then, by some magical osmosis, would restore the natural environmental balance. Hey, it makes perfect sense to me. From people who were unable to spell ecosystem, much less bother to understand the inherent complexities of natural bio-systems, would spring forth a newly restored Everglades. Pardon my cynicism but I’m still not certain which group is characterized by more meretricious double-talkers and double-dealers, Congress or the Corps.

        Regardless of whether today’s crypto-green Corps is intentionally lying through its teeth in an effort to salvage its shaky reputation by re-writing history or is merely trying to lay down a thick smoke screen to cover its past guilt and present incompetence, the reality no one can deny is that the wetlands of south Florida have either been destroyed or savagely altered by flood control and water management practices put in place by the Corps since the 1900s. It is also true that those pre-drainage wetlands can never be fully restored. Let me state that again. The wetlands of south Florida can never be fully restored. Never, never, never, never never. And that also is a nearly universal scientific judgment. One of the next posts presents more details on that topic.

        The very best that can happen is that parts of the Everglades will be allowed to recover certain aspects of their former healthy, pre-drainage state. In the Corps’s CERP scenario, the result will be an environment that is totally human-dependent (meaning non-natural and subject to direct human control and management) and will only “resemble” the pre-drainage Everglades.[2] So, what we will have is an artificial, cultural landscape that would look in part like the real thing but could never function naturally again. It will be a pseudo-natural, Disneyesque Everglades that only mimics the real thing. Thanks to the thoughtless demands of millions of people over the last nine decades to exploit a beautiful but fragile environment through living and working in south Florida. And getting fat at the expense of the Everglades without giving a damn about the inevitable consequences of their indifference.

        Like everything else that has affected the south Florida environment, the problems facing the 2000 WRDA legislation and the goal of restoring the Everglades were myriad and hellaciously complex. Michael Grunwald quotes Stuart Applebaum, the Army Corps of Engineers official in charge of the CERP project, as saying, “CERP isn’t brain surgery; it’s more complicated.”[3]

        Wait, wait, wait. Stop right there. What’s wrong with that picture? More complicated than brain surgery? We can’t let that statement pass without some reflection. What on Earth could make restoring the Everglades to a condition that is only partially natural harder than life and death neurosurgery?

First, who is that guy, Stuart Applebaum? When I first looked him up on the internet out jumped his official Corps resume. When he made that statement he was, in the best Corps terminology possible: "Chief, Ecosystem Restoration Section, Plan Formulation Branch, Planning Division." And the "Chief of the Ecosystem Restoration Section for the U.S. Army Corps of Engineers, Jacksonville District." In a phrase, good old Stu was responsible for leading the Central and Southern Florida Project Comprehensive Review Study. He was the main man.

        Okay, but what about his technical expertise? Mr. Applebaum appears to be well-trained, with a BS in Civil Engineering from the Polytechnic Institute of New York and an MS in Water Resources Engineering from George Washington University. He belongs to all the right professional organizations. American Society of Civil Engineers. American Water Resources Association. And the Society of American Military Engineers. Stuart is a well-trained engineer through and through, wouldn't we all agree? And he's heading what been trumpeted nationally as the nation's largest and most prominent environmental restoration plan. Is anyone out there pondering those obvious contradictions? Like, what does a civil engineer know about environmental restoration?

        Back to Stuart's infelicitous brain surgery analogy. As I asked above, why is restoring the Everglades all that complicated? A better question is, in that quote, is Applebaum talking about bio-systems? Surely they’re not all that complex [actually they are but I’m trying to make a point here so let's not get bogged down in the middle of the complexity theory debate so beloved by biologists]. Or perhaps he was referring to water management controls? No way. The Corps has had those nailed down for four decades or more. So, maybe he meant something else entirely.

        Without ever speaking to the guy, my take is Stu was talking about the money and the politics. Not the Federal CERP budget but the money that's being made every day, year in and year out from the merciless exploitation of the south Florida environment. Oh, yeah, that money. From growing sugarcane. From raising cattle. From mining limestone. From growing subdivisions. From building one strip mall or office park after another. From developing the Miami Lakes wetlands, like that good old boy, Senator Bob the Hypocrite Graham, intrepid supporter of the Everglades that he claims to be while he and his family get fat by eating the Everglades. And of course we can't forget those profits are used to buy access to the politicians' inner circles through substantial campaign contributions. That money, that politics, that grease. You get the picture?

        Author's Note: In 1962 the Graham family began converting its extensive dairy farm holdings, about five and a half square miles of pastureland, into a planned community known as the Town of Miami Lakes. Many family members, including the Bobster himself, continue to have residences there. Meticulously maintained and highly regulated, the community’s mixed-use design has earned praise from certain urban planners and condemnation from environmentalists, since the farm is located in the historical Everglades. Those real estate dealings have proven tremendously beneficial for the Grahams, since their land, which in 1948 was valued at $50 per acre, now sells for more than $400,000 per acre. Ka-ching, ka-ching. Although the Graham Companies is privately held and detailed financial information is not available to the public, some analysts estimate the company’s revenues at well in excess of $75 million annually. Who says eating wetlands doesn't pay? Not that good old boy, Senator Bob. Squeeze them wetlands and out flows cold, hard cash, right into the Graham pockets. Which means the Grahams have been getting fat by eating the Everglades for a long time.

        Back to Stuart Applebaum. If he meant that money and that politics, maybe old Stu wasn't far off the mark with his brain surgery analogy. Maybe he was trying to tell us something critical and had to use code to get the message across. Sort of like Senator Trent Lott using code about racial politics just before he bit the big political bullet. Well, maybe not. After all, Stu works for the Corps and that military-based agency has never had a reputation for developing professional staff with a penchant for subtlety. It’s all "Yes, sir." "No, sir." "May I please kiss your ass, sir?"

        But if he were trying to tell us the CERP is all about the brutal shadow-world of insider politics, he was absolutely correct. How else could agricultural corporations, cattle ranchers, developers, and mining firms be allowed to destroy a unique, world-class natural resource like the Everglades? The only example of its kind on Earth. Wait a minute. Aren't we talking about resources as rare as sugarcane, pastureland, sub-dividable property, and limestone used for road and highway construction?

        Sugarcane can be and is grown much cheaper throughout the tropics than it is anywhere in the U.S. Large-scale properties devoted to cattle grazing are common in every state of the union except Alaska. And limestone is found throughout the country and is imported more cheaply from numerous off-shore sources than it can be produced in south Florida. After the Everglades have disappeared from the Earth and the local limestone deposits have played out, the mining firms will pack up their operations and move elsewhere. And start ripping up that new environment to get the rock they covet. So what happens to the Everglades when they leave? Can it go back to the way it was? NFW. The south Florida wetlands as a natural environment will be long gone. Dead. Non-restorable. Altered beyond recognition. Stay tuned for more information on lime rock mining in the Everglades in a devious, Machiavellian subterfuge known as the Lake Belt Plan, of all things.

        What kind of sense does the above make in light of Appelbaum’s comment? Money, profits, and political influence. Better start thinking grease, baby, grease. That’s what sense it makes. That’s why restoring the Everglades is so complex. By purchasing access to politicians, companies have bought the right to destroy an environment that is irreplaceable. Enchantingly beautiful. Haunting. But those ecosystem cards are easily trumped by money, profits, and especially by access to good old boy Florida politicians. Don’t lose sight of the fundamental, critical significance of those three elements to the survival of the Everglades. Money, profits, and political influence. Trump, trump, trump. No wonder wetlands are being eaten in huge gulps of hundreds of acres at a time.

        Here's a fundamentally dumb but heart-felt question and I'd be grateful if you told me the answer if you know it because I really don't have a clue.

WHERE'S THE JUSTICE OF IT ALL?

        Allow me to get back on track and focus on material that is slightly more technical for a few pages. The intent of the CERP is to capture much of the 1.7 billion gallons of freshwater it loses each day (most of which is now pumped out to sea) and pump it into surface and underground storage areas. That water would then be retrieved when needed. For urban and agricultural uses.[4] Oh, almost forgot, and also to supply the natural system. Yeah, right. To accomplish that goal, the CERP is comprised of 68 major components grouped into over 40 on-the-ground projects.[5] It would create approximately 217,000 acres of new reservoirs and wetland-based water treatment areas, wastewater reuse plants, seepage management, and would remove a few levees and canals in natural areas. However, of the CERP’s 50 construction components, only 17 offer some environmental benefits. One of those components would remove levees, canals, and water control structures in Water Conservation Areas 3A and 3B to reestablish some sheetflow to the Everglades and Big Cypress National Preserve. Which sounds good. But the other 32 components call for construction of more dikes, levees, and pump stations for above-ground reservoirs and water treatment areas, known as Stormwater Treatment Areas (STAs) and mega-wells to pump freshwater into aquifers. Which is not so good if you're stupid enough to be thinking environmental restoration.

        Truth time. Does any of the above read like an environmentally-based restoration plan? Or does it sound like your typical Corps of Engineers flood control-water management project? You think maybe that's why civil engineers are in charge of making the Plan happen? Duh? So, why don't they just drop the scam and call a spade a spade? The reason? Because the CERP was sold to the ever gullible public as a project that would "restore" America's Everglades. And no one wants to admit what a shameless fraud Congress and the powerbrokers have been pulling over the public's eyes from the get-go.

        The CERP also proposes to employ 300 deep wells, known as aquifer storage and recovery (ASR) wells, with pumps capable of injecting 1.7 billion gallons per day into underground storage zones. Originally the Corps planners had intended to store water in large reservoirs but they hit the wall of $40,000-an-acre plus land prices in the Miami area and the sugar industry’s reluctance to sell land in the north. Not to mention the high evaporation rates everywhere in south Florida and lawsuits brought by environmental organizations. So, about one-fifth of the Plan's cost will be spent on wells, to the staggering tune of $1.7 billion. The intention is to store 20 times as much water as is now contained in the world’s largest aquifer storage site in Las Vegas.[6] And that’s despite the fear of professional geologists that the proliferation of wells and the enormous quantities of water being pumped could fracture the aquifer formations and contaminate south Florida’s drinking water supply.

        Say, ever wonder about the drilling firms in south Florida that will get fat sinking all those wells? No? Well, take an educated guess about how much money those firms have been pouring into political campaign coffers lately. Beaux coups bucks. To make certain the ASR idea doesn't dry up. Interestingly, those deep injection wells are new, never tried technology. No one, not even the Corps's own experts, knows if the technique will work. Or if any of that injected water can be recovered. No exaggeration.

        Hey, you’ve got to realize that optimism is a way of life when the Corps's talking about technological fixes to environmental problems. Remember, it’s the Corps of Engineers and those boys do love high-tech. By the way, biologists as a species are always less than upbeat about the efficacy of technological fixes for environmental problems. Which is why they are never in charge of projects like the CERP. And why should they be anyway? After all, we’re talking about environmental restoration, a topic of considerable bio-complexity. So that’s why engineers are the head honchos. Right. Doesn’t that make perfect sense to everyone? It should if you look behind the curtain and see the Big Three powerbrokers hard at work manipulating their puppet-head, bend-over politicians.

        However, what is certain [as of summer 2011] is that the Plan will cost a minimum $13.5 billion to implement and an estimated $185 million plus for annual operations and maintenance. When that bouncing ball hits the multi-billion dollar category we’re talking real money. Construction costs will be split evenly between Federal and State funding sources, which is very interesting since the Federal government typically picks up 80 percent of the costs on similar projects. So, why the unusual funding split? My guess is that both the powerbrokers and their butt-boy politicians knew that the U.S. Congress would balk at coughing up 80 percent of the original $8 billion tab so made the deal much more palatable by dropping the Federal share to 50 percent. The State, in the form of the SFWMD, will be responsible for all annual operations and maintenance costs. And how is it we’ll get environmental restoration through flood control and by moving water more efficiently? By osmosis? Well, no. Using one flood control and water supply technique after another will only get us more water management, not environmental restoration. And for their next trick, the Corps will pull a giant swamp rabbit from its magic hat.

        What about the dreams of all the environmental groups for genuine restoration, for the freshwater infusions that the Everglades National Park desperately needs? But remember, those specific components of the Plan have been shoved five or more years into the future. But, don’t hold your collective breath. Even Richard Punnett, the Corps’s chief Everglades hydrologist, doesn’t expect significant water flow changes by the magic 2015 date. Tommy Strowd, the Water District’s operations director, agrees, “It could be a lot longer than that.”[7] Robert Johnson, Everglades National Park's chief scientist, doesn't expect the CERP to help the Park until 2020, if at all. "I hate to be rude," Johnson said, "but isn't this supposed to be a restoration plan?"[8] How many of us can appreciate that environmental scientist's enormous sense of frustration with the Corps's charade and with the Congress that arranged the deal?

        The very real fear of many internationally prominent bio-scientists[9] is that construction of "improvements" contained in the CERP may actually damage the fragile eco-systems of Everglades National Park and Biscayne National Park. But you have to remember that those guys are merely biologists and ecologists. Which is the reason the Corps engineers can ignore them. After all, what could biologists possibly know about environmental restoration that civil engineers don't?

---

[1] U.S. Congress, Water Resources Development Act (WRDA) of 2000; Public Law No. 106-541.

[2] And that is the Corps’s description: USACE, Comprehensive Everglades Restoration Plan, Final Feasibility Report and PEIS; p. 2-1, April 1999.

[3] Michael Grunwald, “A Rescue Plan, Bold and Uncertain,” Washington Post, Sunday, June 23, 2002.

[4] Farmers and urban utilities have been assured that the replumbing proposed in the CERP would not reduce their water supplies. Source: Susan Jewell, U.S. Fish and Wildlife Service, The Recommended Plan: The Everglades Restudy, available on the internet at: http://sofia.usgs.gov/sfrsf/plw/restudy.html

[5] Project Status Reports are available online at: http://www.evergladesplan.org/pm/program_docs/proj_status_reports.cfm

[6] Although “considerable knowledge on ASR technology has been gained over the last five decades, the proposed implementation scale for ASR to meet the objectives of the CERP has never been applied. The largest operational ASR site to date is at Las Vegas, Nevada, with about 30 wells and a total recovery capacity of 100 million gallons per day. A considerable number of significant uncertainties remain.” [Emphases by the author.] Source: USACE; Comprehensive Everglades Restoration Plan — Aquifer Storage and Recovery Program; available on the internet at: http://www.evergladesplan.org/docs/asr_whitepaper.pdf

[7] Quoted by Michael Grunwald, “A Rescue Plan, Bold and Uncertain; Scientists, Federal Officials Question Project’s Benefits for Ailing Ecosystem,” Washington Post, Sunday, June 23, 2002.

[8] Michael Grunwald, “Everglades: Between Rock and a Hard Place,” Washington Post, June 24, 2002.

[9] Letter signed by several of the U.S.’s most famous and well-respected biologists: Stuart L. Pimm, Department of Ecology and Evolutionary Biology, University of Tennessee; Paul R. Ehrlich, Stanford University; Gary K. Meffe, Editor, Conservation Biology; Gordon Orians, University of Washington; Peter Raven, Executive Director, Missouri Botanical Garden; and Edward O. Wilson, Harvard University.

Our Angel Baby 03

Little changed all through that most miserable of days. Minor temperature or pressure fluctuations, 280, 265. Back up to 275 and 280. No further change for two hours. That’s it. Karin’s condition remained very critical. By the end of that second day we had no reason for hope but the residuals were there. To tell the truth, much of that day we spent in the Hospital chapel or other churches praying. Yes. Praying. Me, the avowed agnostic, the atheist in disguise. Reduced to blubbering tearfully in one church after another. Pleading with God to spare our child. Begging for her life without shame. Promising anything, everything, if only she were spared the sword of death that hung so perilously close to her head. So young. So innocent. So tiny. A happy, perfect baby who brought us nothing but joy. Spare her, please, God. Please, God. I cried so much I thought I should be dehydrated.

Somehow we slept straight through the 6:00 AM alarm I had set the night before. Perhaps I half heard it and turned it off in mid-ring. At 8:45 the telephone’s insistent clanging woke us. San groggily reached for the phone, knocked it off the night stand, grabbed it and dropped it again before finally answering. “Hello. Yes. Yes, Dr. Gago. Yes. What?” She exclaimed sharply. I couldn’t tell if it was from horror or what. Then she said, “Oh, God. Oh, God. Thank you. We’ll be there in less than a half hour.”

“What? What is it? What happened?” I demanded, frantic to hear good news but terrified for the worst.

San grabbed my hand and pressed it to her face, tears running down her cheeks. “Bob, it’s wonderful news. Karin’s better. She’s improved a lot since yesterday. Her pressure dropped to 230 last night and has stayed low for over six hours. And her fever is down.”

“What’s her condition,” I asked, leaping out of bed and hunting for clean clothes.

“Still critical but a step down from very critical. Dr. Gago wants us to come in to his office immediately.”

Thirty short minutes later we were in Gago’s office. Both he and Dr. White were there. Dr. White gave us a brief run down on what was happening.

“Yesterday afternoon we discontinued the medication to counteract the pulmonary hypertension. The critical period was last night. Your daughter seems to have gotten through the night extremely well. Her pressure varied from 230 to 260, with the majority of the readings in the low end of that range. She appears to be stabilized around 240 to 250. That’s down from yesterday’s average of 275. Considering that she’s no longer on the medication we are much more optimistic about her outcome.”

“Mind you,” Dr. Gago interrupted, waving a stern finger at us. “She’s still critical and unless her pressure continues to decline her chances are not good.”

But for us it was wonderful news that brought with it that most wonderful of all emotions, hope.

By noon Karin’s temperature was 102º and her pressure a steady 230. When we were allowed in at 6:00 PM I snuck a peek at her chart and saw the pressure readings, recorded at 15-minute intervals, ranged between 220 and 250. But there were many more in the 220 to 230 range than the higher numbers. For the first time in three days we felt there was a chance for our daughter to live. A real chance.

Dr. Gago called our house the next morning at 6:25, just as we were headed out the door. Karin’s pressure never rose higher that 220 all night. And at that moment it stood at a normal post-op of 180 over 95. Her temperature was 100º and appeared to be falling slowly. If she remained stable all day she would be taken off the critical list and discharged from the Cardiac Intensive Care Unit and returned to the Pediatric Ward. And yes, we could see her as soon as we arrived at the Hospital. And no, we didn’t have to take Tigger away any more. The fluid build-up was gone. Drive safely, he urged. Your daughter is going to recover.

Better words we had never heard. We yelled and cried our relief and happiness, weeping tears of joy, jumping up and down like crazy people, waking Virginia and David and probably everyone in the building. We didn’t care. Karin was going to live. That’s all that counted. Karin was going to live.

Oh, happy, happy day. The sun shone again. The earth turned on its axis once more. Our beautiful angel baby was going to live. Thank you, God. Thank you, thank you.

*     *     *

The last part of Karin’s stay in the Hospital was relatively uneventful. Except for the nearly constant stream of amazed doctors who wanted to see her and examine her chart. Each and every one commented that her case made medical history. According to Dr. White no infant with such acute hypertension that lasted three full days had survived. Not one.

But the most emotional visit was from Dr. X, Karin’s pediatrician. He came into the room slowly, very subdued, asking if we had time to talk to him. Which of course we did. In the most sincere tone he apologized to us for failing to make the correct diagnosis and then, overcome with emotion, he couldn’t continue. It was the first time I had seen a doctor cry and tried to comfort him. I told him that both Drs. Gago and White said that he did a great job in finding the defect. We weren’t angry with him at all and wanted him to continue as our pediatrician. Which he did and was until we moved from Michigan.

During Karin’s recovery Dr. Gago came to look in on her very few days. On one of those visits he told us that he thought Karin pulled through for one reason only and it had nothing to do with the medical care she had received. He was convinced she made it because she was a very strong and healthy baby. He thought the key to her survival was in her excellent physical condition. Despite having as severe a PDA as he or Dr. White had ever seen or ever heard about, she exhibited almost no external symptoms. She never was sick, even with minor colds. Nor was she ever breathless when she would play outside. She was just an exceptionally strong, healthy infant. The reason she probably developed hypertension was the size of the duct and the amount of blood flowing through it. Dr. White had estimated about one-third of her available blood supply was simply circulating from her heart to the aorta to the pulmonary artery and back. When the PDA was closed her system was unable to adjust to the sharply increased flow and went into hypertension. But it was her own strong little body that finally brought itself back to normal and got rid of the hypertension, not the drugs, and not even the medical care. Even though, he said with a laugh, that he thought that that care was exceptional. And I agreed wholeheartedly, holding back my feelings about the nursing care she had received while first in the Pediatric Ward.

Karin was released from St. Joseph’s Mercy Hospital exactly one week to the day after leaving the Intensive Care Unit. Over the next few months, as she recovered, San and I talked about how we should handle the scar issue. Scars on boys are signs of manhood, passages of which to be justly proud. Naturally, as a girl and later a young woman, we never wanted her to be ashamed of or embarrassed by her scar. So, we told her from the earliest moment that the scar was a sign that she was a very special person. That no one in the country who had her problem had lived. She was the very first. And that made her very special and was something to be proud of.

To our collective relief, our interpretation took, big time. To our delight, Karin would frequently offer to show our adult friends and strangers her scar. And when they would show some polite sign of mild interest she would whip up her blouse and show them. And we would laugh when their eyes would invariable pop out of their heads. I mean, it was and is a monster scar with many hundreds of stitches. Over the years Karin would always win the “Who’s Got the Biggest Scar” contest young grade school kids never cease to love playing. But she was never ashamed of it. Never once.

Today, her scar has shrunken in comparison with the rest of her body, since scar tissue does not grow, and is hard to see from any distance except up close. Even when she’s wearing a bikini it’s hard to see because it has faded until it’s the same tone as her skin. It still extends from her left armpit around to the middle of her back. But now her heart and arteries are perfectly normal.

She was our angel baby who became our miracle child.

Our Angel Baby 02

The next two weeks shot passed in a flash. The only thing I distinctly remember doing is getting several of my colleagues to cover the courses I would have to miss during the operation and the days immediately afterward. Karin was admitted to the hospital on March 11 to start the various tests and preliminary procedures. The operation, which had been set for March 13 was moved back to the 16th because Dr. White had to re-schedule the cardiac catheterization owing to conflicts in his calendar. At that point we had met with Dr. White several times when he examined Karin. Not only was he everything Dr. Gago had said but he gave us a feeling of tremendous confidence in the whole operating team. By March 11th we felt well prepared. Or so we thought.

For the first two days, San and I tried to arrange our schedules so that one of us would be in the Pediatric Ward with Karin all through the 24-hour day. But in 1971 the Hospital had no place for parents to stay overnight in her room. Nor was the waiting area dedicated for overnight use by parents or relatives. So we wound up sleeping in a recliner chair in the hallway right outside her room. Which basically meant that we didn’t sleep at all those two nights. Not good. Those sleepless nights convinced us that we should arrive at the Hospital before 7:00 AM each morning, stay until around 9:00 PM, and return home to sleep. That way we could get some rest and be sure we would be there during the day when Karin would need us most. It was the best we could do under the circumstances.

Our most serious problem was that the nursing staff was either too busy or too stupid (we never did determine which it was) to realize that a 16-month-old baby could not feed herself. And she was in a Pediatric Ward for Christ’s sake! By the time we would arrive in the morning her food was either gone or was too cold, or too hot, to be eaten. After two days of complaining to the nursing staff, who incidentally steadfastly maintained that Karin simply was not hungry and didn’t want to eat, I took matters in my own hands, arriving at 6:15 to see what was really happening. I hid in the bathroom with the door half closed so I could see nearly the entire room. At 6:30 a food tray was noisily deposited on a metal rack attached to Karin’s bed by a food server, who swung the rack over the bed and left. Karin, naturally, was awakened by the clatter. She sat up and realized that her breakfast was being served, so to speak. She picked up a piece of unbuttered toast that she could see under one of the metal lids that had been slightly knocked off the plate and began nibbling on it. That was as far as she got. She was unable reach the hot oatmeal or the scrambled eggs, which were positioned so far under the lid as to be totally inaccessible for an infant. She was also unable to open the carton of milk or the apple juice. Duh. Naturally, that required more strength and coordination that she, or any toddler possessed.

As I stood in the bathroom I grew angrier and angrier. What the hell was going on? How could they neglect our baby like that? A food server showed up and removed the tray around 7:15. At 7:30 exactly I stood before the Director of Nursing and proceeded to give her a piece of my mind. I was properly infuriated and let her know it. I mean, Karin was in the care of the Pediatrics Ward. And they couldn’t figure out that as a toddler she was unable to feed herself? After letting me blow off considerable steam she apologized profusely and assured me that the problem would be corrected. Right.

When the very same thing happened the next morning San and I determined to take matters in our own hands. This was our daughter. We were not about to let her go hungry. So, rather than kill ourselves with anger and acrimonious feelings, no matter how well justified, we began arriving at her bedside around 6:45 every morning and feeding her ourselves. Which we did for her entire stay at the Hospital. But it pissed us off in the extreme that the Pediatrics Ward of a major hospital would be managed in such a preposterous manner. Be assured that I wrote a scathing letter to the President of the Hospital explaining the situation in great detail and demanding to know if that was the proper way to run a hospital or to treat an infant.

The day before the operation, Dr. White performed the cardiac catheterization to locate the PDA and measure its size. Karin, as usual, was a gem throughout the procedure and lay absolutely still despite the “discomfort” White said she would experience. Don’t you love the way doctors euphemistically refer to pain. Discomfort my ass.

Afterwards Dr. White told us that the PDA was much larger than they had anticipated and that we made the right decision in scheduling the operation as soon as possible. It appeared that the shunt was growing faster than her body. He congratulated us on facing the issue squarely and scheduling the operation for March. June might have been too late, he said. Which really sobered the shit out of us. Too late? Holy shit. That’s the first time we realized the seriousness of Karin’s condition. Too late meant White thought she would not have been able to survive a June operation. Whoa. Talk about scary.

That night, one of the third-year thoracic residents working with Dr. Gago came in to examine Karin. He casually mentioned that Karin was an unusual PDA patient. When I questioned him about what he meant he said she was an extremely healthy baby. And that in itself made her unusual. Most young children with PDAs had a variety of physical symptoms, ranging from mild to very serious. He ran through a fairly long list, of which I remember only a few. A newborn with PDA may experience fast breathing or even have difficulty breathing. They have more frequent respiratory infections that tend to flare into pneumonia. They tire more easily with exercise. Their extremities, including fingers, toes, nose and lips, may be cyanotic (bluish) from poor circulation. And frequently they grow very slowly. Even in the absence of other symptoms, the turbulent flow of blood through the PDA puts the child at a higher risk for a serious infection known as endocarditis.

He said that the only symptom she exhibited, other than the murmur itself, was a very slight aortic arch. When I asked what that was he pointed to her chest and said that you can see how her chest rose slightly from the underlying pressure of the PDA. When I was unable to see it he repositioned Karin in the bed until we were standing directly behind her left shoulder.

“See,” he said, lightly touching the area with his finger. “There it is. A very slight arch on this side of her chest.” And sure enough, I could see it. I was amazed. It was the first external sign that Karin had congenital heart disease. And we had never noticed. Not that we would have since it was so very slight.

The night before the operation neither of us slept. San and I tossed and turned in synch until, at 3:00, I got up and read a light novel until 5:00. Dr. Gago had told us Karin would be taken to surgery at 6:00. The operation would begin at 8:00 and would be over between 10:00 and 11:00. Then she would be taken the post-op recovery floor where she would be until released around 1:00 or slightly later.

We arrived at the Hospital just in time to kiss Karin goodbye. She was already a little groggy from pre-op medication and was very sleepy-sweet. We hated to let her go and after the attendant wheeled her out we held each other tightly cried for a few minutes. After that we went down to the cafeteria and bought breakfasts we couldn’t eat.

After pacing paced around aimlessly until 9:30, we went up to the post-op recovery waiting room, with all the other frazzled and worried-looking relatives. Where we waited, and waited, and waited. Eleven o’clock came and went. And then twelve, twelve-thirty. At 1:00 I heard a stat (emergency) call for Drs. Gago and White. I don’t believe San heard it but I was on pins and needles. If she had missed it I was not about to tell her and get her crazy with worry, which was her modus operandi. But I started to sweat. Then it was 2:00, 2:30, 3:00. What good does it do to get upset, I asked myself, desperately trying to relax but losing the battle. Gago and White had dozens of patients in recovery, I told myself. It could be any of them. Don’t panic. Quit trembling, I ordered. Fat fucking chance of that.

At 3:00 a very serious Dr. Gago came into the waiting room and squatted down in front of us. We both were taken by surprise. Previously he had always been formal. For the first time I saw a look of uncertainty and concern in his eyes. He was grimly serious. My heart fluttered in my chest and stopped. I immediately suspected the worst.

In a low whisper, he said, “There’s not much time so I have to tell you this in a hurry. The operation was over by 10:00. Everything went as we had expected. However, the shunt was much larger than we had imagined, even with the arteriogram. Karin was then taken up to post-op recovery. Her pressure was a normal post-op 180 over 90. She was resting comfortably, coming out of the anesthesia. Shortly after 12:30 her blood pressure began to rise. By 12:45 it was 250 over 125. At 1:00 it hit 300 and became immeasurable. The staff cardiologist injected medication through her chest wall directly into her heart in a emergency attempt to relieve the pressure. Unfortunately, it remained over 300 for at least six minutes. Since that time the pressure has fluctuated between 280 and 295. She has been moved to the Cardiac Intensive Care Unit. We are doing everything in our power to reduce the blood pressure. Dr. White has calls into his colleagues at the Mayo Clinic and the Cleveland Heart Clinic. Frankly neither of us have had this situation occur in such a small child.” He looked intently at each of us in turn. “We are doing everything possible to save her.”

“Oh my God, oh my God!” San exclaimed, looking like her world had just collapsed. “My poor baby! What happened?”

“She has developed acute pulmonary hypertension, Mrs. Ernst.”

Those awful, awful words. I couldn’t force my lungs to work. There was an enormous band constricting my chest. I tried to think but couldn’t organize coherent thoughts.

“Please,” I pleaded for him to give us a way out. “Tell us her chances.”

He didn’t flinch, just hit us with it straight and hard. “I’m afraid the prognosis is not favorable. If we are unable to reduce her blood pressure quickly her body will not be able to handle the stress much longer. At this moment she is in a very critical condition. Her chances for survival are less than one in ten. Perhaps even much less than that.”

Even four decades after that horrible event I cannot think or write about it without hot tears in my eyes and a constricted throat. The remembered pain and emotion almost overwhelm me.

“When can we see her,” I asked, trying to control the rising panic.

“Not today. It’s critically important to stabilize her condition. It will take all our ability to bring her through the rest of the day to tomorrow. In the morning we can talk again.”

“What should we do?” San asked, the pain so evident in her voice and on her face.

“You should go home and try to relax. There’s nothing you can do here and we will not be able to tell you much even if you stay.”

He took out a card and wrote on it. “Here are the names of the head nurses in the Cardiac Intensive Care Unit. The first one is on duty right now. The second will come on with the second shift. Call them for information once every two hours. Please, no more than that. They will be very, very busy. I will call you personally if any significant change occurs, day or night.”

My entire body trembled violently, as if I had been struck by a tremendously powerful blow. I knew exactly what he meant. “Significant change” meant he thought Karin was going to die. Oh, my God. Oh, my God. What could we do? Oh, Jesus.

He stood up and gently helped San to her feet. Her face was a frozen, terrified mask. She looked completely numb, dazed, and confused beyond comprehension.

“Mrs. Ernst, you should go home and try to rest as much as possible. We will need you to be strong for tomorrow. There’s nothing you can do now but pray.”

He was telling us that he thought Karin would die during the night or the next day. I nearly collapsed right there but somehow was able to stay on my feet. It was too horrible a prospect to think about.

He took a business card out of his white coat and handed it to me. “My home phone number is listed on my business card. Call me if you need to talk. Now, please, go home and lie down. You’ve both had a terrible shock.”

I can’t remember any of the rest of that day. For all I know we got home via magic carpet. I called the Cardiac Intensive Care nurse every two hours on the nose. The only thing I was told was that Karin’s condition remained unchanged. Which told me nothing and all too much at once. When I asked for details, like temperature and blood pressure, I was told that only the doctor could give out that information. After the third call and the same response I was so pissed off that I called Gago’s home and left a message for him to call me. When he called a few minutes later I complained bitterly that not only could we not see our daughter we were refused information about her condition. I told him that that was bullshit and wanted to know immediately how she was doing.

“Approximately ten minutes ago your daughter’s temperature was 104º Fahrenheit, and the pressure was stable at 285. She is resting quietly. We are continuing medication to reduce the pressure and bring down the fever. I must apologize, Mr. Ernst, but the nurse in prohibited by State law from giving you the specific information you desire. Call my office tomorrow morning between 7:00 and 7:15 and I’ll be able to provide the latest update on her condition.”

And that was that for the rest of the evening and perhaps the longest and worst night of my life. Or so I thought at the time.

Poor San remembers almost nothing of those details. She has blocked them out almost completely. But sweet Jesus, how she suffered. Her pain was tangible. She was being twisted in a mental rack that was tearing her apart. Her mother, Virginia, was staying with us to take care of David and she tried to comfort San as well. To no avail.

Promptly at 7:00 the next morning I called Gago’s office. His nurse told me he was already in surgery but Karin’s condition was substantially unchanged: 104º fever and pressure of 280. Her condition was still very critical.

I called Drew Nazzaro at home and told him what was going on. He asked me if there was anything his wife, Lala, and he could do to help us. Thanks, but there’s nothing, I told him. He said he would tell Ross Pierson, the Chairman, and the rest of the faculty. Keep a positive attitude and keep praying. Good advice but . . .

At 8:30 the Hospital called and asked if we could meet with the chief Social Worker at 10:00 that morning. San took the call and couldn’t figure out what they wanted. I didn’t tumble to it either. Had no idea whatsoever. Shows you how the intellect is dulled by terrible stress.

Promptly at 10:00 we showed up at the Social Work Office and were introduced to the young woman who was the Department head. She appeared to be in her late twenties or early thirties. We sat in her office and listened dully as she talked about the seriousness of Karin’s condition and the possibility of her not recovering. She specifically asked us to consider that Karin was not going to survive. Those were her exact words. Not survive. That’s when I realized that the Hospital thought Karin was going to die and was doing its official best to notify us. San sat expressionlessly through the entire discussion. Her face was made of stone. When the interview was over and we were walking to the elevator San said in a very quizzical tone, “Wonder what that was all about.”

I knew she had blocked out the entire past half hour so I just shrugged my shoulders and said something about the Hospital covering its ass. Today, she simply can not remember any of the meeting or what was said. For years she denied it happened at all. And even accused me of making it up. No way. The meeting happened exactly as recorded above.

A few minutes later we met Dr. Gago in the Intensive Care waiting room.

“The news I have is not good. But I caution you not to get overly upset about it either. Karin’s condition is relatively unchanged although her pressure is down somewhat. During the night it fell as low as 260. A few minutes ago it was just over 275 and her temperature 103.5º. Dr. White and I have called twelve heart and pediatric centers in the country last night and this morning without achieving positive results. We could not find even one similar case to point the way to a treatment regime that we have not already considered.”

San interrupted him in a voice so low as to nearly be indistinct. “You mean no other children who had heart surgery developed hypertension?”

“Oh, yes. Quite a few, in fact. But none as acutely as Karin. Their pressures were not as elevated nor were they as sustained for such a long period. Most of those children recovered fairly swiftly or . . .”

“They died.” I finished the thought for him. Wanting San to hear it from someone’s lips.

“Yes,” he said.” Usually in a matter of hours. One of Dr. White’s residents has been researching pediatric PDAs since 5:00 yesterday afternoon but has not been able to find one case like Karin’s.”

I knew he meant a case where an infant patient developed acute hypertension and lived for twenty-four hours.

He cleared his throat, shifting uncomfortably the chair. It was obvious the bad news was not over.

“In a few minutes you will be permitted to see Karin. But only for about ten minutes. I must caution you as to her physical appearance. She is on a heart monitor and is being fed intravenously. Her body is swollen in reaction to the medication she has received. She does not look like the little girl you saw yesterday morning. Please, please try to remain calm when you are with her. If one or both of you breaks down it will do no one any good and could even affect your daughter’s health negatively. I’m not trying to be harsh but this is very important. Do you understand?”

“Yes.” San answered for both of us.

“Now for the difficult part. We have two very serious problems to contend with. The first is obviously the hypertension. If we do not reduce it then she will die. To reduce the pressure we have been giving her adult dosages of medication. Unfortunately, she is not responding. We can continue this course only for a very short time because the medication is so potent its side effects in a child this small will be fatal. Therefore, sometime this afternoon we must discontinue the pressure reduction drugs. If her pressure increases or even stays at the same high level then we have no alternative medical treatment and will be helpless to proceed.” He stopped, waiting for our response.

“What else can you do?” San asked in a small, tight voice.

“Nothing, I’m afraid. No other course of action is available.”

“We understand the problem and agree with what you and Dr. White are doing,” I said, knowing that’s what he needed to hear. “But what’s the second problem you mentioned?” Anything to get off that terrible topic.

“There’s a distinct possibility Karin’s lungs are filling with fluids. We are unable to administer the proper medication because of potential adverse interaction with the pressure reduction drugs already in her body. And because her liver may become irreversibly damaged if we do.”

“Pneumonia,” I said. “And you can’t give her the required antibiotics.”

“Precisely. So we must try to get Karin to drive the fluids from her lungs herself.”

“How,” San asked.

“She must be made to exercise her chest and lungs. By crying. That way she might be able to drive out the fluids and avoid pneumonia.” Gago looked at me. “That’s why I asked you to bring her favorite doll or estuffed animal.”

Ridiculous, but the only word I noted was the Hispanic accented “estuffed.” It was the first time his Latin accent was noticeable. That’s when I understood the pressure he was under.

“Mr. Ernst,” he prompted.

“Oh, pardon me. I was daydreaming. Yes, I brought her favorite little doll.” I pulled a cute stuffed animal out of a paper bag I had brought with me. It was the tiger from Winnie the Pooh and Tigger too. Good old Tigger, Karin’s favorite.

San gave me a look of death. “When did you get that?” she demanded.

“This morning. Dr. Gago called while you were in the shower.”

“Why didn’t you tell me?” She was clearly irritated.

“I guess I forgot.” I hadn’t told her because I knew she would worry herself sick wondering why we needed it. But I had guessed why from what Gago had told me on the phone. It had not been a subject I wanted to discuss with San at home or on the drive to the hospital.

When we entered the Cardiac Intensive Care Unit it was as though we had descended into the bowels of Hell. Not that it was dark or dirty or anything remotely like that but it was filled with such tangible human suffering. Oh God, God, that we never ever again have to go through such a soul racking, terrible experience. Our poor little daughter, so beautiful, so happy, so full of life, lay in a huge oversized bed. Her arms and legs weighted down with sandbags so she could not move and rip out all the tubes running in and out of her tiny, violated body. Tubes into her nose, her chest, her arms, her groin, her ankle. A huge blood-stained bandage covered her chest. Her small legs were bright red, swollen like fat sausages. In her right leg alone I counted twenty-eight needle punctures, a tribute to the intense effort to save her life. When I gently touched her leg I found it hot, as if on fire. Hotter than it would be just from the fever. The needle marks and the heat were a result of all the injections she had been given. How could I not weep for her suffering.

It took a superhuman effort for me not to fall on my knees and sob like a baby. Her right arm was wrapped with a small blood pressure cuff and unknown wires and electrodes were attached to every available piece of skin. And every moment we were in the Unit all we could hear was that awful, starkly terrifying sound of the heart monitor Beep         Beep                                              Beep Beep                                                                      Beep.

So horribly irregular. Such a constant reminder of the slim thread from which she was hanging. With every inordinately long pause between electronic pulses my heart would stop. Unconsciously, I would hold my breath in white hot fear until the next beep. My poor, poor baby. With being aware of it huge tears streamed down my face as I stood, staring at her. Our wonderful, perfect child. Our angel baby. Even though I made no sound I couldn’t stop crying. It was the single worst moment of my like, seeing her so helpless. So wounded, so vulnerable. I could do nothing to help my baby yet in a minute would have to make her cry. Oh, Christ, I prayed. Please don’t make me do it. Please. I can’t, I can’t hurt her more than she is now. Please, Jesus . . .

At that awful moment the nurse took Tigger from me and put the stuffed animal in Karin’s little hand. She stirred and my heart froze. The nurse released the weight from her arm so she could cuddle the doll. Karin was unable to see either of us from where we stood but we could hear her say, “Ti, Ti.” Which was what she called Tigger. That destroyed all the resolve and composure left in me.

At the nurse’s urging we stepped forward to the side of her bed where she could see us. It took every last ounce of strength I had left to smile through the salty tears and say, “Hi, Karin. How’s my little girl?”

San bent over and kissed her face, over and over. Karin began crying, “Mommy, Mommy.”

And all the time we could hear the ominous Beep                             Beep

                            Beep                           Beep   Beep                            Beep.

The worst part, if a worse part can even be imagined, came ten minutes later when we had to kiss Karin, wave good-bye, and take Tigger from her hands. Tigger, her faithful friend she had fallen asleep with every night for nearly a year. The little pal who was with her constantly.

Karin struggled to get up, holding her arms out, wailing piteously, “Mommy! Mommy! Ti! Ti!” And cried, and cried as the nurse gently pushed her back into bed, strapping her arm down with the weight as we walked out of the Unit. It was the hardest thing I have had to do in my life. To turn my back and walk away from my sobbing baby. It was an inexpressible agony. Nothing would ever match the pain that stabbed my every nerve. By that time we were both reduced to emotional and physical wrecks without the strength to do anything but stumble blindly from the room. I don’t know if I was holding San up or she was holding me. It was a toss-up.

That horrific scene was repeated at 4:00 in the afternoon and 8:00 that night. The same sequence, the same results. There’s nothing more I can add to how we felt. It was a living Hell on Earth.

Our Angel Baby 01

Karin is our second child and first daughter. She was born in Ann Arbor, Michigan, on Halloween 1970, and weighed nine pounds. To Sandy’s dismay, Karin arrived about four weeks later than the due date given her by the OB/GYN in Gainesville, which may have helped account for the baby’s size.

The very first day Sandy and I brought Karin home from St. Joseph Mercy Hospital she was so precious that I couldn’t stop admiring her. [Author's Note: Back in those days mothers stayed in the hospital for up to five or six days and we fathers had relatively limited exposure to the newborns.] When we awakened in our bedroom around 6:30 the next morning we instantly thought the same thing: something was terribly wrong. The baby had not cried in the middle of the night wanting to be fed. Terrified, we both leapt out of bed, thinking the silence meant she had died during the night. To our infinite relief, Karin was lying in the bassinet by the wall, sound asleep. We couldn’t believe it and thought surely she would awaken the next night for a bottle. But that next night was a repeat of the first. Karin never did wake up during the night, unless she was sick, and that didn’t happen for well over a year.

As an added bonus, Karin almost never cried. When she was hungry she would whimper or protest a little but then was quiet until we fed her. She seldom fussed or complained for more than a matter of seconds. We would have to forget to change her diapers for a considerable time before she would protest, and then it was never a loud, prolonged, or outraged crying. In addition, she was never ill. Never once in her first year.

None of our friends with infants of a similar age or slightly older could believe how sweet natured and content she was. All we had to do was put her in the pumpkin seat or the wind-up swing and she would be happy for hours. Literally for hours. She was in so many ways our angel baby, which is what we called her.

On Halloween 1971, Sandy was busy helping with the festivities at David’s pre-school. So she asked if I would take Karin to the first-year check-up with her pediatrician. Since it was a Tuesday morning and almost all of my classes were Monday-Wednesday-Friday I had a very light schedule at the University and was happy to oblige . It wouldn’t be the first time I had taken one of the kids to the doctor’s office alone.

Soon after giving Karin’s name at the reception desk we were called in, right on time, which was a rarity as the pediatrician, Dr. X, was popular and was almost always busy and behind schedule. And therefore typically late with all his appointments. I put Karin on the examination table, removed her top, and sat on a nearby chair. We had both been through the procedure several times before and she enjoyed it, like most things in her life. Karin, as always, was in a happy mood and smiled like she had invented contentment.

As soon as the doctor came into the examination room he immediately pulled up Karin’s undershirt and listened to her heart. And listened, and listened. Usually Dr. X was relaxed and friendly but that day he seemed a bit short-tempered and brusque. Then he had her sit up and put the stethoscope to her back and listened, and listened, and listened some more, moving the instrument around quite a lot, even under her arms. All told, he must have listened for several very long minutes. It was obvious that he was not following his regular procedure. I became progressively uneasy but didn’t want to say anything because he was so intent on listening. After removing the stethoscope, he turned from the examining table and sat at the small desk against the wall and began writing in Karin’s medical records. And wrote and wrote, without saying a word , which I thought very strange. Almost in defense I picked Karin up and held her close as he wrote in silence.

Finally, not able to stand the tension mounting within, I asked, “Is something wrong? I mean, you were listening to her heart for quite some time.” My voice seemed squeaky with apprehension.

Without turning to look at me, and continuing to write as he spoke, he said, “It’s as I diagnosed at birth. Karin has congenital heart disease.” He never glanced at me. Had he done so he would have seen the stunned look on my face. Congenital heart disease? What the hell was that? I didn’t know what to say or do. I sat there, totally confused. My perfect baby had a disease? A congenital heart disease? What the fuck was that? My brain refused to function. I was so shocked I could have fallen on the floor.

At last he put his pen down and turned toward me. “Mr. Ernst, it’s just as I initially diagnosed the day Karin was born. I detected an abnormal heart sound then but, because that’s not at all unusual at that early age, I said nothing. Many babies have similar abnormal heart sounds that disappear in the normal course of growth and development. However, as you can see from my records,” he gestured to the document on the desk, “I noted the murmur at each succeeding office visit. At three, six, and nine months.” He gestured for me to come over to his desk. “Come and see. I made these notes the first time I examined Karin at the St Joseph’s Hospital. Just after she was born.”

Sure enough, his scribbled notes read, “Irregular heart sound. Murmur. Check heart carefully at three months exam.”

“That’s why I asked to see her at nine months. After six months, I usually see normal babies at their twelfth month, not nine. But I wanted to keep track of Karin’s problem. Today, the sound seems louder and more distinct than before. Consequently, the chances of her growing out of it are almost certainly non-existent.” He stopped, looking at me expectantly, waiting for a response.

I had no idea of what to say, what to ask. Had I missed something? A cue, perhaps? This role, as the parent of a child with a disease, was one I had never imagined I would be playing. I was out of my depth. But I had to say something.

“What does that mean? What, what are the implications?”

“Quite simply it means we have to watch her very closely for the next nine or ten years or so. Probably some time after age ten she will require open-heart surgery to correct the defect. But that probably won’t be until she is between twelve or thirteen years old. This kind of heart defect is best dealt with at that age. When her body is nearly full grown. That way the repair will be permanent. We’ll just have to keep our eye on her to make sure she doesn’t get really sick and develop pneumonia, because a significant part of her blood is not circulating through her body. So, in the interim, there’s plenty of time.”

For what, I wondered. Time for what?

The rest was a blur, an impenetrable fog bank. I know he told me more about the type defect she had but I wasn’t able to retain it. It was like I was wrapped in a thick blanket of insulation. The only thing I remember about the rest of that morning is driving home and looking at my perfect angel baby, so beautiful and healthy-looking, never sick a day in her twelve months of life. My daughter. Thinking that she was not the same as she was a half-hour ago. That on the trip to the doctor’s office she had been perfectly fine and now she had congenital heart disease. I had no idea of how I would break the awful news to San.

*     *     *

Telling San was a horrendous chore I dreaded. I sat around the apartment for an hour, wondering how to do it. San didn’t take bad news well, to put it mildly. Unexpected bad news always upset the shit out of her and this was about as unexpected and bad as it came. When she and David arrived, flushed with excitement from the Halloween party, I felt a tremendous urge not to tell her, to put it off until tomorrow. But I had no choice. I had to tell her then. After she settled the kids down for their afternoon nap and we both went to the kitchen for a sandwich I knew I could not eat. Off-handedly she asked me how the doctor’s visit had gone. Expecting the usual answer. It went fine. I was sitting the table and told her to sit down. She immediately got a strange look on her face and asked me what was wrong.

“Is Karin sick?” she asked. Her voice held the first inkling of apprehension.

I took her hands in mine, feeling stupidly dramatic but not knowing what else to do and said, “No, Karin’s not sick but something is wrong with her. Doctor X told me that she has congenital heart disease.” Even though I said the words it was as if they had no meaning.

Her reaction mirrored mine. “Congenital heart disease? What’s that?” She started to get up from the chair but stopped half way up and gave me a hard look. “Bob Ernst, if this is another one of your stupid practical jokes, I going to kill you.”

“Sit down, San,” I said. “This is serious. Dr. X said he noticed the problem when she was born but thought it would go away on its own. A lot of babies are born with abnormal heart noises that don’t develop into anything. Karin’s problem didn’t go away and it seems to have gotten worse. She’ll need an operation in about eleven or twelve years.”

“An operation? Oh my God!” Her eyes teared up immediately. “My baby has to have a heart operation?” The tears streamed down her face as I held her and tried as best I could to comfort her.

The rest of that day and the next were straight from hell. Neither of us could believe it. Karin was such a perfect baby in every way the idea of her having a disease from birth was almost incomprehensible. San couldn’t accept the diagnosis but refused to talk to the doctor. When I suggested that we make an appointment for both of us to go see him she refused. It was almost as if she did not hear the words from his mouth then the situation wasn’t real. I tried to get her to talk about it but she became angry. So I dropped it.

The doctor had scheduled Karin’s next check-up for the end of February, when she would be fifteen months old. When the time arrived I insisted that San and I go together so we both could ask whatever questions we wanted and hear exactly what he said. We were both very tense and stressed out by the time we were called into the examination room. The exam went almost exactly like the previous one. Dr. X listened and listened to Karin’s chest and back and then went to his desk and wrote his notes. But afterward the good doctor took a little more time to explain the problem.

Karin had a hole between two of the chambers in her heart. As a result, a significant amount of blood was not circulating through her body. The surgical procedure to correct the defect was fairly simple, as heart surgery went. But it had to be postponed until her body had neared the end of the pre-teen growth spurt, when the heart had reached its maximum size. He said that the murmur remained quite distinct and might even be a little more pronounced than the last time. He told us to bring her back in another three months.

That’s when, out of the blue, I asked if he could refer us to a heart surgeon or a cardiologist so we could get a second opinion. At that point he became rather testy, saying that I was jumping the gun by many years and that Karin’s condition simply wasn’t serious enough to warrant seeing a specialist. When I insisted, he very huffily wrote two names on a prescription form and left the room, making a sarcastic remark about over-protective parents that I have long since forgotten.

I spent the rest of the day trying to convince San I was right in taking Karin to see another doctor. She agreed with the doctor and thought I was over-reacting. All she wanted was to put it out of her mind as quickly as possible. To forget Karin had a problem for ten or twelve years. But I was absolutely determined.

A very nice couple with two children five or six years older than ours lived immediately upstairs in the apartment building. The husband’s name was John but I have forgotten the wife’s name and their last name as well. John was a very bright guy who I liked a great deal. He and I played chess periodically and chatted quite a bit in the hallway and outside about our kids and life in general. More importantly, he was a fourth-year resident in radiology at the University of Michigan Hospital. That night I went upstairs to talk to him. I told him the whole story about Karin and Dr. X. I asked him if he knew the doctors whose names Dr. X had so grudgingly recommended. He looked at the piece of paper Dr. X had given me and said that he knew both doctors. And that they both were well regarded cardiologists. From his tone I knew he wanted to say more so I prodded him, asking what he would do if one of his own children had a similar heart defect. Without a word he wrote two more names on the paper and handed it back to me.

“I’d take my kid to see one of these two guys,” he said without hesitation.

I looked at the names, not recognizing either. “Who are they?”

“They’re both thoracic surgeons at the University of Michigan Hospital. Practically all they do is surgery related to heart problems.”

After a little more prodding he admitted that he would call the first name on his list as soon as possible. Tomorrow, in fact. When I questioned him as to the reasons for selecting that particular surgeon he told me that he was the most skilled and the fastest thoracic surgeon in Ann Arbor. And speed made a tremendous difference in heart surgery because the longer the chest cavity was open the higher the chance of infection.

And that’s how, the very next morning, I came to call Dr. Otto Gago, over San’s strong objections. In fact, she was so upset that she hardly spoke to me all that day. Two days later the three of us were sitting in Dr. Gago’s office at St. Joseph’s Mercy Hospital in Ann Arbor. It turned out that he had offices at that hospital and the U of M Hospital. His first open office appointment happened to be at St. Joe’s. Gago turned out to be from Caracas, Venezuela.^[1] He was a tall, slim, gentle man with a very slight accent. And he was very handsome and had long slender hands with long, thin fingers. The very ideal of a surgeon. You could see San visibly relax and let go of the tension that held her in a vice grip. It’s incredible the effect good looks and physical stature have on people.

After talking to us for a few minutes about Dr. X’s diagnosis (he had copies of Karin’s medical records in front of him) he helped Karin to take off her top and listened to her heart. I know that I was holding my breath and thought San was as well. Hoping beyond hope.

After less than thirty seconds he removed the stethoscope and placed it on the table. To my surprise he thumped the examination table rather sharply with his hand.

          “No, no!” he exclaimed sharply but not loudly. “Dr. X is quite wrong. Karin has a defect but it is not a hole in her heart.” He smiled reassuringly at us. “You see, many pediatricians have limited exposure to persistent heart defects. Consequently, they have some difficulty in diagnosing those conditions correctly. Your little girl has a PDA, which is patent ductus arteriosus. In Latin, patent means ‘open.’ The ductus arteriosus is a shunt or a small blood vessel that is connected to the pulmonary artery, the main vessel leading to the lungs, and to the aorta, the main vessel of the body. You should know that PDA is present in all babies before birth. In utero, the baby’s lungs are not used because the fetus gets its oxygen from the mother across the placenta. The ductus arteriosus is part of the fetal pathway that helps to distribute oxygen from the mother to the fetal organs and allows the blood flow to avoid the lungs, which do not need a lot of blood at that time. When the baby is born, the lungs expand, their blood vessels relax to accept more flow, and the ductus arteriosus usually closes on its own within the first 15 hours of life. Which is one reason why Dr. X should be congratulated for detecting the problem at that first examination. However, as you now know, sometimes the ductus arteriosus does not close on its own. That is why it is referred to as a patent, or open, ductus arteriosus. And although this condition is much more often seen in premature babies, it may also occur in full-term infants. Like Karin.”

“You mean she doesn’t have congenital heart disease?” San’s eyes pleaded for him to give us the only answer she wanted to hear.

“Oh, no. About that Dr. X is absolutely correct. And he should be congratulated on catching the defect as promptly as he did and for following it so closely.” He handed his stethoscope to San. “Please, put the tips in your ears and the metal cone on Karin’s chest and listen carefully. You should be able to hear the loud, regular lub-dub heart beat. But in the background, if you listen very carefully, you will hear a soft but distinct swishing sound. That will be the blood moving from the aorta to the pulmonary artery through the shunt. Can you hear it?” he asked, leaning forward as if to encourage her.

San’s face lit up with amazement. “Why yes, I do. Actually you can hear it very easily.”

My turn was next. And there was no doubt, the sound was easily detectable, even to my untrained ears. How strange it was to hear first-hand what previously had only been a fear-producing phrase. Congenital heart disease. I felt at once relieved and even more worried. Now our baby’s problem was a concrete reality. But it was one we had to face squarely. And I was determined to do just that.

“How many years before Karin will need surgery,” I asked innocently. Wanting but not wanting to hear his response. Praying that she would never need it. That Dr. X was wrong about that key point.

“Years, Mr. Ernst? I’m afraid your daughter will have to have an operation as soon as possible. This summer is the absolute longest you should wait.”

BOOM!

It was a bomb exploding in front of our eyes. My stomach dropped away, like I was ridding an express elevator to Hell. His words not only took my breath away but I couldn’t breathe. When I could bear to look at San she was as white as a ghost. For a moment I thought she would faint.

“This summer! Oh, Bob. What are we going to do?” San quickly turned and looked at the doctor. “Is there any alternative to surgery?” She looked completely lost and helpless as Gago shook his head.

A terrible lump sat in the middle of my throat. It was fairly easy to accept that Karin would need an operation some time in the far distant future. Ten or twelve years is an eternity. But four months? That was almost unthinkable.

“Let’s schedule it for the end of May when your classes are over. Or June,” San said in an outwardly calm voice. “That way you’ll be on summer break. It’ll be easier on the both of us if you’re home.” Her eyes gave the lie to her steady tone.

“What would you recommend?” I asked Gago, trembling inside, knowing that that awful thing inside Karin was not going to get better as time passed.

“In all honesty, I must tell you that in a case like this sooner is much better than later. We cannot predict how fast the shunt will grow. Or if it will grow at all. But waiting is not a strategy I would recommend.”

That did it for me. “Let’s schedule it as soon as possible,” I said firmly, with far more strength than I felt. “There’s no reason to wait until summer.” I couldn’t look at San but felt her eyes burning into me. I knew she wanted to put it off as long as possible and was angry with me.

The doctor reached for the phone on his desk and told his secretary to contact both Ann Arbor hospitals to find out when the next heart surgery operating room was available. We sat in silence for what seemed hours but it was only a few minutes before she called back.

Gago spoke for only a few seconds before placed the phone back in the cradle. “An operating room is available in the middle of March here in St. Joseph’s, that’s almost exactly two weeks from today. But there’s no availability at the University Hospital for more than a month.”

“Let’s do it in March,” I said without hesitation and as I looked at San.

Dr. Gago turned to San and asked, “Mrs. Ernst? What do you think?”

She sighed before answering. “Okay. I don’t like it but March it is.”

“Good,” he clapped his hands. “That was a hard but wise decision. Now it is my duty to caution you about the difficulties in this type of thoracic surgery. Actually, the surgical procedure will not involve the heart directly but only the two major arteries, the aorta and the pulmonary. In itself, the operation is relatively short, safe, and simple. But any surgery in the chest cavity is not to be undertaken lightly. We have to be concerned with many variables. The child’s reaction to the arteriogram that will precede surgery. The anesthetic during the operation. The operation itself. Possible post-op infection. And, most seriously, pulmonary hypertension.”

The way he paused in what was obviously a well rehearsed and frequently given speech and looked at us expectantly told me that this was a problem he wanted to avoid.

“What’s pulmonary hypertension and how dangerous is it?” Ever the university professor, I always had to have maximum information.

“Well, it can be extremely dangerous. Hypertension occurs after thoracic surgery in approximately three to five percent of patients. Why it happens is unknown. The causes are many and complex and have proven difficult to unravel. But the critical fact is that more than 75 percent of post-operative patients who develop hypertension die.”

He pursed his lips into a tight, thin line. “It’s a risk you have to take because without this operation your little girl will probably not survive three or four years at most. If that. With a successful operation, her cardiovascular system becomes normal and the prognosis is that she will have a normal life span.” He shrugged his shoulders and spread his hands expressively. “As Karin’s parents it is your decision.”

We looked at each other for a brief second and simultaneously said, “March.”

“Okay. Before we leave, can you tell us what’s an arteriorgram,” I asked, feeling lost in all the unfamiliar medical jargon.

“Of course. It’s a fairly simple procedure that involves injecting a dye directly into the coronary arteries so we can see the problem. It’s classified as an invasive test because it requires passing a tiny catheter from the femoral artery in the groin up through the aorta to just above the heart where the coronary arteries start. The test will show blood flow through the coronary arteries and is the most direct method for detecting the specifics of Karin’s problem. Seeing the blood flow, the size and the position of the shunt, will allow your cardiologist, Dr. Paul White, and the thoracic surgeon, which is me, to identify the best surgical procedure.”

“When does Karin need to see the cardiologist,” San asked.

“As soon as my secretary can schedule it. This week I hope. I’ll have her call you with the time. He’s located here, just down the hall." He smiled at San and patted her arm, “So you can relax, Mrs. Ernst. Your daughter is in excellent hands.”

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[1] Strange, but for several decades, I remembered Gago as being from Argentina. It was only in 2002 when I looked him up on the internet that I discovered my error.