Choosing a Second Heart -- 2007

By 2007, it was apparent that Henry’s AV valve was failing fast which, in turn, compromised all the other surgical repairs. We knew what our options were: find another hospital that would attempt the valve repair, heart transplant or let Henry live as long as he could without further surgeries. To be very clear, we fully considered that last choice.

For a few months, Ned and I discussed what we thought we should do. In many ways, that was all we had left to talk about. In the midst of all of this, I knew my marriage had ended.

I struggled a great deal with the idea of a heart transplant. Like all families who receive gifts of life, I wondered who I was to wish another child dies so that mine had a chance to survive. People would say, “Well, that child’s going to die anyway.” That was little help because it still seemed as if I was poaching on another family’s heartache.

I made myself imagine letting Henry have the life he could with the heart he was given. I knew I would have to watch him die. I told my closest family and friends that we were considering not going on the heart transplant list and what that eventually meant. To their credit, not one of them tried to talk me out of this choice. They were scared and heartbroken, I’m sure, but they had the grace to recognize that Henry had already been through so much.

What I did not tell anyone was that I began planning Henry’s funeral. I had to do this, not to be morbid but as a coping strategy – it allowed me to acknowledge we were living on borrowed time. It gave me permission to name what the worst possible situation could be and then prepare for it. I bought a book of children’s eulogies (This Incomplete One) and selected a few songs that I felt spoke to my son’s vibrant life. It was a quiet summer. Gwyn and Ian were busy with summer camps and Henry stayed in a preschool program. I had finished my dissertation and taken a few months off before beginning a job search.

Mourning crept into me. I began to understand my son did not just have a horrible defect. His heart was dying. Henry always had an odd mix of symptoms. Yes, he only had about 75% of the oxygen he needed and his fingers, toes, lips and nose were always blue. His belly was terribly distended, filled with fluid. When your heart does not function properly, excess fluid is created around the heart and then dumped into the abdomen. Henry took three diuretics daily but we could never get rid of his big belly.

But the medical evidence of Henry’s heart struggles never matched the way my kid lived life. Henry’s appetite was more like one of a sixteen year-old boy than one with a chronic illness. As for his energy levels, all I can say is that he was hard enough to control even with his malfunctioning heart. Henry could not run much, ride a tricycle or jump (he had a 1.5 inch vertical on the basketball court) but he still had plenty of juice. He rarely napped and could spend hours playing with classmates and his siblings. We had taken him on trips overseas and to remote high altitude settings, the kid always did fine. Certainly, my boy had the energy to constantly wind up in trouble – dismantling curtain rods, wrapping himself in aluminum foil, using my curling iron as weaponry.

At the end of summer, my determination finally beat the crap out of my fear. After being told by the Oklahoma City doctors that Henry was running out of options, after imagining his funeral, I set aside my grieving and guilt. I was not going to let this child die.

Intellectually, I knew Henry might die anyway. But I’d be damned if I was going to sit by helplessly. I turned on the researcher in me. Who, where, what was going to fix my child?

God stepped in to answer this for me.

Unbeknownst to me, an old high school friend, Wendy, had a former brother-in-law, Dr. Andrew Maxwell, who was a pediatric cardiologist at Stanford University’s Lucile Packard Children’s Hospital (lpch.org). She called him and asked if he would look at Henry’s surgical notes. Then she called me, delivering a miracle. Dr. Maxwell graciously took the case to Stanford where dozens of doctors -- cardiologists, cardio-thoracic surgeons, the transplant team, intensivists and anesthesiologists – reviewed it. Within a matter of weeks, the hospital called with a guarded plan of action – they were moderately confident they could repair the AV valve. Dr. Hanley, a world renowned pediatric cardio-thoracic surgeon, agreed to attempt the surgery.

We arrived at Stanford, just Henry and me, in early December. Ned was to arrive the day before the actual surgery. Except that, on that day, the doctors had to cancel because another child was so gravely ill and she needed to take Henry’s slot. His surgery was postponed for the following week. The cardiology team then suggested a routine cath for Henry after the weekend before doing his actual surgery – just to get a “fresh idea” of what was going on in there.

So instead of having open heart surgery, the three of us had an unexpected weekend pass in this amazing locale and we took Henry to San Francisco on the train. The kid ate his way through Fisherman’s Wharf and Chinatown. He rode the carousel and I bought salt water taffy for Gwyn and Ian. Ned and I bought nice Christmas gifts for one another, even though our marriage had ended. It was one of many times that I realized, divorced or not, Ned was an outstanding father and very good friend.

Monday morning we checked in and met the most dismal cath doctor. I could not have cared less that he was not going to win any congeniality awards, I’ve longed learned skill matters more than charm on this front. But our anesthesiologist did one of the kindest things we’ve ever witnessed at a children’s hospital. She gave Henry an oral sedative and then let me carry him straight into the operating room and hold the gas mask to his face until he fell asleep. I can honestly say I fell in love with her at that moment.

Henry had the cath and the doctor came out somehow even more dour than when we had last seen him. Very bad results. Henry’s pressures were way too high, just a few points off from generating other organs’ failures. It was a blessing that his surgery had been cancelled, the doctor did not know if he would have survived it.

What? How did things get so damn bad since the last cath? Why hadn’t another cath been done in between? And what in the hell were we going to do now? Oh, and by the way, right after I left Henry knocked out in the OR, he had a “cardiac event” that required them to use the paddles. “Cardiac event”…sounds like a gala with an unfortunate interruption.

At this point, we had yet to meet Dr. Hanley -- the surgeon who had offered to operate on the valve. Albeit he was overwhelmed with other children’s cases, I was, nonetheless, not leaving the state of California until he looked me in the eye and gave me some options. It would take three days for him to see us. In that time, we took Henry to San Francisco again, the local Episcopal Church came with a beautiful quilt for Henry to take home, our adorable social worker whisked Henry away for play, story and music time. And I marveled at Lucile Packard Children’s Hospital – they had a school for patients and siblings, an amazing parent’s library, and it seemed as if 50 people were involved in Henry’s case.

We stayed at the Palo Alto Ronald McDonald House (a gorgeous establishment) and ate a lot of Chinese food, tangerines and pastries from the nearby, hoity-toity shopping district. Ned bought Henry a rockin’ pair of Vans with black and white checks.

We had gotten to know a few other families at the Ronald Mc Donald House and everyone’s story sucked. Cancer of every sort, lots of heart defects, crashed immune systems, rebuilding spinal columns. One little girl had lost all of her eyebrows because of chemo. One night during art time, she simply painted them back in with turquoise paint. Then she and Henry took turns shoving mini-marshmallows up each other’s noses.

Early one morning, I was making Henry’s breakfast when a mom came out with her luggage.
Another mother rushed over to her and gushed, “Oh good, you guys get to go home!”

“Yes,” replied the mother with her suitcases, “she died last night.”

My stomach dropped. I scooped up Henry with his cereal, dashed past her with a pathetic smile of condolence and ran back to my room. I didn’t want that to be me. Ever.

Doctors tried to introduce the option of a transplant to us slowly over the week. One morning it was announced that we should take this opportunity to meet with a transplant specialist, Dr. Chin. I wanted to hear what he had to say. But I was also determined to meet with Dr. Hanley. Funny how I placed all my confidence in a man I had never met. We had waited days for Dr. Hanley to have time for us. We would have to wait another day.

Dr. Chin was a compassionate man who had the unenviable job of telling me Henry’s heart “was incompatible with life.” As if this was an e-Harmony survey. After explaining to us how horrible Henry’s heart valves were and how these were now potentially compromising his kidneys, lungs and liver, Ned totally got on the transplant bandwagon. He wanted to know how long we could expect to wait, how long his recovery would be, how long he would have to live with a new heart.

Then came the drawing. I cannot tell you how many cardiologists are frustrated Rembrandts. They whip out their scrip pad with furrowed brow hoping they can somehow make you understand, through the gift of their art, why things suck so incredibly badly. Ned shone here. Sure the SVC would flow right into (or out) of that valve (I sure as hell don’t know). Absolutely those collateral vessels are troublesome. Except that when I saw the diagram, it looked like a reindeer.

This was all very educational but part of me refused to believe they were talking about my child. Henry was going to be saved through a miraculous AV valve repair just as soon as we met with the Dr. Hanley. As Ned hung onto every word Dr. Chin said, I contemplated how I could storm Hanley’s office, taking his assistant hostage until he agreed to find time for me. Perhaps, that was unfair. Dr. Hanley wasn’t avoiding me. He was spending hours upon hours in surgery saving other children’s lives. But, damnit, I was ready for him to take on my kid.

However, I did pay more attention when Dr. Chin diplomatically suggested that we not get Henry’s transplant at this renowned hospital. Why? Because in California there are at least four hospitals vying for pediatric hearts. Another hypoplastic boy, Henry’s age, had been waiting a year at this very hospital. The implication was that Henry did not have that long to wait. Chin urged us to get listed as soon as possible. This soundly distinctly more complicated that noticing we were running low on milk and running out to get some.

“Go to St. Louis”, he told us. It was closer to our home, had less “organ competition” with other hospitals and was equally respected for their successful heart transplants. More importantly (and morbidly) St. Louis got more hearts because young children died at higher frequencies in that part of the country. Why, I wanted to know. He mused, “Less seatbelt usage, house fires and such.” I decided I didn’t want to know what “and such” meant.

The next day, Dr. Hanley, whom I had pinned all my hopes and sanity on, had an hour to meet with us. Right off, he didn’t mince words. If they had attempted the valve repair, given what they found from that week’s cath, Henry would have had a 50% chance of making it through the surgery. If he had survived, his chances remained at 50% for living past a few years.

My lungs emptied of all air and the room was quiet save for Henry who was crawling underneath Hanley’s desk. The doctor said he would still attempt the repair but that we had to know the odds we were facing. I asked him, “If this was your child, would you risk the surgery?”

“No.”

He estimated Henry had about a year to live before his heart failure began to rapidly steal his life. I asked how Henry would die. It would begin with a decrease in energy, increased fluid retention, trouble breathing and eventually his heart would just stop beating. It sounded so gradual and yet I knew it would be an exhausting, painful way to go.

We chose not risk the AV valve surgery and left California the next day. A little more heartbroken, trying to find the faith to sustain us for this new turn in Henry’s road. We got home just before Christmas and a phone message was waiting for me. Dr. Chin, the professional I had attempted to dismiss, had already called St. Louis and arranged a preliminary evaluation for Henry. I set about wrapping the kid’s Christmas presents and breaking the news to family.