Transplant Evaluation, St. Louis: January, 2007

It seemed as if everything was falling apart. Ned and I we were divorcing and this made for a sad household. Then, we had to turn around and tell Gwyn and Ian that I would be leaving again because their little brother needed a heart transplant. We overwhelmed them and I can hardly claim that I was doing my best mothering then. I foolishly thought that I’d have time to keep a close eye on them but the transplant evaluation process moved much quicker than I expected. By the first week of January, St. Louis Children’s called with our appointment for mid-January. In my journal, I wrote:


Henry and I arrived in St. Louis on Sunday night and there was no room at either Ronald McDonald House so we stayed in the hotel attached to the hospital for a $100 a night. Ouch. That and $800 airfare was a lot to financially absorb this month.


Bright and early Monday morning Henry began all his testing – starting with them taking 11 vials of blood from my 33 lb kid. Then a neurological evaluation where the doctor asked Henry to tell her how many legs a horse had. Henry’s response was, “You tell me.”


Off for chest x-ray, echocardiogram and an EKG. Followed by meeting the transplant team – the director, Dr. Canter, and our coordinator, Kathleen, are so easy going. I am coming around to the idea of a transplant. Only because it is the only option we have left. We met the transplant surgeon, Dr. Gandhi, who I grilled, making sure he had all the consult notes from Stanford and Oklahoma City. Doctors sum parents up quickly it seems – that one can’t understand what I am saying, this one is expecting miracles from me. I guess doctors look at me and think she takes notes with such ferocity that she may be a malpractice nightmare.


While we were waiting to meet the TX (transplant) team, I looked around at the other families in the waiting room. All the while Henry is literally running his tongue across the front of massive fish tank as if he could somehow absorb the water through the glass. Then he is trying to climb up onto the window ledge. Just like my kid to try to find a way to need stitches in the midst of us trying to get a heart transplant. But most of the kids are jumping off benches, crawling under tables, deciding whether they, too, want to lick the fish tank.


And the parents look as if they are on their way into or out of a concentration camp. Scared, exhausted, pissed.


After the TX team, we had a CAT scan with IV infused contrast. Henry freaked out because he had to be restrained, endure another poke and the machine makes weird sounds. And he bled out when the IV went in – thanks blood thinners! We both looked as if we had sustained major wounds. We ended the day with a 30 minute ultrasound of his neck and groin vessels – to find the best route for future caths, I assume. Henry left the hospital exhausted with about 35 stickers – pointless rewards for what, to him, seemed like enduring pointless pain. He threw the stickers in the trash.


That night while we were waiting to pick up dinner in the hotel restaurant, a man started choking. Nobody did anything until I went into EMT-hysterics mode and started yelling at the guys at the bar to start the Heimlich. Notice how I didn’t do anything for the poor guy – just assumed the town crier mode. I am sad to say that the event hardly affected me at all, I am too stunned by what is happening in my own life.


Tuesday morning we had the psychological assessment. No one ever tells you directly what they are assessing but we had a lovely clinical psychologist who works specifically with TX families. I sat there and puked up the last five years of our stressful lives while Henry touched every damn thing in the office except the toys she had laid out for him. My inner dialogue was “Shut up Erin, pace yourself – the notes she is taking surely say ‘bat case mother, family is not good candidate’.” But, in the end, she did not seem overly alarmed at my state and passed along some very good advice.


She was asking me how I was doing in terms of familial support – who was helping us with our other kids, travel arrangements, etc. I told her we had family and friends who would do anything for us but they lacked coordination, knowing exactly how they could help. It really is too much for me to stay on top of Henry’s stuff, continue working and then mastermind how I am going to keep my house running every time I have to drag Henry off somewhere. The psychologist suggested I appoint my most organized, Type A friend to serve as command central while I am gone. She would be the one to arrange the meals, coordinate kids’ transportation, find someone to take the dogs. You appoint your drill sergeant and she has a team of five people or so that are in charge of certain tasks – Jim will see to mowing the lawn, Jennifer will take the two dogs, Cheryl can come in for laundry. I haven’t decided which unfortunate friend will get this drill sergeant job but it is so helpful to have a plan for how people can help us out.


I am fiercely independent – I like to help people, not need help. I like being the center of attention just not the most tragic case in the room. This foolish mindset has been excised from me because there is no way I can do it all. I can’t even fix my kid. I am neglecting Gwyn and Ian. Today I feel like I have no business being a mom.


After my “psycho assessment,” we met with the financial coordinator which I was dreading. I knew a heart transplant cost, on average, $500k. I also knew that TX personnel encouraged families to hold fundraisers. Now, really, how in the hell was I going to ask people to give me money with my good Southern upbringing? I kid you not, I find this incredibly tacky for myself to do but would, of course, do it for anyone else.


I am incredibly fortunate to have very good medical insurance. And so while this TX will be a huge crunch on my family’s finances, I think we can actually survive it – assuming St. Louis Children’s will accept payments of $10 each month for the next 70 years. I kid! Sort of. But as I sat with this wonderful woman who has the difficult job of telling families what it costs to save their child, I really did get angry. Not at her but at the fact that a lot of families have no options. Imagine if you were someone with very limited financial resources and no insurance. Perhaps state aid programs can cover most of the surgery but what about the doctor consult bills, lodging, airfare, meals? What if getting your child a new heart means you lose your job because your employer won’t give you two months off? It is damn unfair. How are you to pay for the TX meds afterward – to the tune of $3000 a year forever?


The financial coordinator showed me a cost graph that included the organ retrieval fee. This is essentially the cost of having surgeons fly to the location where the deceased child is, removing the organ and flying back. $75,000. That is not a Southwest Airlines fare, I’m sure.


Never believe that the US medical system is democratic. I absolutely know that Henry had the best medical attention based, in large part, on the facts such as: his parents could afford appropriate levels of insurance and Ned and I were educated enough to know how to do research, get second opinions and dialogue with doctors at a level that let them know we weren’t nimrods. Do I think that how I dressed, the color of my skin, Ned’s presence, the vocabulary I used made a difference? Absolutely. Doctors quantify and qualify their patients’ families based on brief interludes. Sad but true. Long ago I learned to think of doctors as exceptionally trained service workers. They are to provide me with a service and I will not go into their domain beholden to them until they fix my kid.


And so, now I am thinking about a fundraiser. This really messes with me mentally – right after knowing that another child has to die for Henry to have a chance at surviving. What am I supposed to do? Ask a friend to host a bake sale, a gala? Put Henry’s face on a jar at the local 7-11? How did I end up so bankrupt – not just the money, but in terms of being able to keep my family going?


I’m lucky. I don’t need to raise $500k. But I will have to sell a beloved property that I always thought I would build a cabin on. I need a voodoo ceremony done on my car so that it will last another year. No more eating out at lunch. I know, stupid sacrifices compared to what other families (with ill children or not) must endure.


After financial planning (I really was so grateful to this woman who greatly diminished my money fears), it was off to meet the child life specialist and social worker. Both are so chipper that I nearly fell face flat on the table trying to maintain a quasi level of enthusiasm. Then the big consult with the TX team at the end our trip.


All along I had been obsessing about one blood test. For TX kids, the doctors need to verify what levels of antibodies your kid has – antibodies that are too high can make it more likely that the body will reject the foreign organ. Henry has not had a lot of oral antibiotics for ear infections and so forth. But he certainly received a lot of antibodies with blood infusions through all those surgeries. So the doctors at Stanford and St. Louis had prepared me for the fact that a high level would mean we would have to entirely suppress Henry’s immune system before TX. Fabulous. We have to endanger his life again to try and save it.


Well, just like Henry to defy all expectations. His lab report came back very low for antibodies – so low that Dr. Canter said he had no real medical explanation for it. Fine by me. Doctors need scientific proof, I just need my kid to get well.


The TX team was very positive about Henry’s outcome – the surgery itself has a low mortality rate but surviving that first year is the real challenge. If we can get past that, who knows? 12 -15 years? Henry’s case is a little more complicated in that he had the hypoplastic surgical series and therefore the surgeon isn’t exactly sure what he will encounter once inside Henry’s chest. Before they can transplant his heart, they actually have to reverse many of the repairs they have already made so that the new, better heart will fit properly. This makes me feel like I traveled a great distance down a highway only to discover I missed my exit and now need to turn around. Except that this is about the choices I made for Henry in the past six years and they all turned out wrong.


The transplant team stressed that they do successfully transplant hypoplastic kids. Henry was listed as a 1B. 1A kids are the most critical – most often in the hospital or on an IV infused life-saving medicine. They get hearts first. 1B’s are either in the hospital or at a level of heart failure in which their growth is severely compromised – the latter being Henry’s case. Level 2 kids are at home, probably doing well but will, at some point, need a transplant.


How long will we have to wait? I don’t know but I was told to expect several months. The downside of all this is that Henry may get very sick (and be classified as a 1A) before his heart comes in. Either way, to quote our transplant coordinator, Kathleen, “it’s just a matter of time.”