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.”

December 28, 2007

My journal reads:

Christmas came and went filled with the sort of spirit that makes me want to imbibe spirits. Henry was a lamb in the nativity play. Again, Ian tried to hold out for the role of Luke Skywalker. Henry became incensed when the understudy baby Jesus was given to Gwyn to hold on stage. He handled the situation by trying to actually sit on the baby.

On Christmas Eve, we hosted a cookie buffet at the PICU for families staying there. Pattye (Malley’s mom) helped me pull it together and of course those incredible nurses. I met a two year-old, Geni, who had a heart transplant at four months old. She was back in the hospital for other stuff. Her mother, Megan, is great – we plan to do lunch. I need to be with someone who has been on the other side of this.

We served over 20 families and Henry and Malley roamed the halls handing out candy canes. Again I was struck by how many poor families are present. Families living in the waiting room and eating from vending machines because they can’t afford the $3.00 cafeteria meal. Families where only the 8 year-old speaks English. Families ravaged by addiction, little opportunity, no winter coats, no cars. You try to not make judgments as you had them a cookie tin to fill but that mother could not be older than sixteen. The grandmother who asks if she can take an extra candy cane for her other, healthier grandson. So many of them seem broken, celebrating Christmas in the last place anyone wants to be.

Going to Stanford has changed me, again. Even as Henry’s condition becomes dire, I am beginning to feel more in control, like I am achieving equal footing with the doctors who treat him. I have learned that how doctors treat you is based on how much information they perceive you understand. Five years into this, I understand a lot.

Now I ask questions that set doctors aback but effectively change the tone in which they speak to me.

“Who will be opening my child up before you arrive in the OR?”

“What do you expect to happen if Henry comes out of surgery still on the bypass machine?”

“When you say his survival rate is 70%, what factors are you considering?”

The medical profession has been well trained to only disseminate the amount of information the family seems able to handle. We, the family, set the bar for how doctors will speak to us.

The doctors say how much they appreciate “parents like you” – researchers, bulldogs, always present, always taking notes. But I know I also put them on edge. When they don’t look me in the eye, I move so that they have to. When I don’t understand something, I ask them to explain it. And I come prepared with the Henry binder – meds listed, past surgical reports, copies of our insurance card. I ask what happened at conference each time Henry’s case is discussed, having learned that the impressions doctors take from those reviews differ amongst them. I took my business cards and had labels placed on the back with all cell phone numbers and emails, giving them to doctors with the spoken expectation that I wanted to hear from them again. I am sure I annoy them. I don’t give a damn.

When your child is in the PICU there are multiple players involved – doctors, surgeons, nurses, technicians, therapists and the family. But the inner triad is really between the MDs, nurses and the parents. I had to insist that I knew my child best. While all the wonderful medical personnel were compassionately treating his condition, I was Henry’s ultimate caretaker. It was up to Ned and me to fight for him, to remind the doctors that he may be Protein C deficient, to insist that I remove his EKG strips because I could do it without him freaking out, that an O2 sat of 76% was normal for my boy. Sometimes it distorted my sense of motherhood because I felt more like a social worker or lawyer. I needed to present his case, insert myself into dialogues and always, always, remind the doctors and nurses that Henry’s parents were keenly watching them. Being emotional, being the heartbroken mother happened privately but it splinters your personality. I was devastated and trying to be in charge at the same time.

You cannot buy your children enough Christmas gifts to help them overcome tremendous sadness. Ned spends as much time here as he can but Gwyn and Ian understand that there is no going back for the two of us. Now we’ve told them that their brother needs a new heart.

Of course they had questions like “Where will you get a heart?” “Will Henry die?” In my daughter’s brief life, she has lost her aunt and both of her paternal grandparents. She can barely remember a time before her “broken baby brother” was born. Her parents divorced. It is too much for her, for Ian, but I don’t seem to be able to provide a more stable life for them.

Ned and I tell the children that we don’t know when Henry’s heart will arrive and that he may not make it. I can hear therapists around the world gasp at my horrible handling of this situation. I don’t want to give them more information than they can process but I can’t lie to them either.

Ian thinks that getting a new heart is like special ordering hardware. “Can we get one at Home Depot?”

We do the best we can. “Sometimes children are hurt very badly in accidents and their bodies die. But you know that God is holding them.” I don’t want them to dwell on this. In a child’s mind, organ donation must seem incredibly violent.

We also tell them that nothing is going to change right now, as if there is anything left in their lives that could be changed. Mom is going to take Henry to St. Louis to visit his new transplant doctors in the next several weeks but that she will only be gone for a few days. Everyone is heading back to school after Christmas break, Henry included. Mom will wear a special beeper. When that goes off, it means a new heart is waiting for Henry in St. Louis.

Then it’s like the other times Henry’s had surgeries. Mom and Dad will be gone for a while but grandparents, aunts and friends will come and spoil you rotten. Then, all three of us will come home and Henry should be doing much better.

“It will all turn out fine. You’ll see.”

Gwyn leans against me and says, “You’re good at being brave.”

Acknowledgments

Before I get too far into this saga, I need to thank some people. When I started this project two years ago, I wasn’t sure where I was heading. Momentarily, I imagined this becoming a book but I let go of that fantasy pretty quickly for two reasons. First of all, I remember the kind of mom I was while in the PICU. I was brain dead mommy. I could barely follow the directions to safely open a can of Diet Coke let alone read a whole book. Secondly, I have published a book and it is a gruesome amount of work (although I am proud to say it is a bestseller …after 1,270,942 slightly more popular books.)


So I ditched that idea and turned to the internet. Slight problem. I know nothing about writing in “blogalese” or creating a website. The utter lack of graphics, video or uber-cool interfaces are completely mea culpa. I will try to jazz things up as I overcome my technical ineptitude.

I am not a blogger but I am self-absorbed. For the years I kept journals about Henry’s multiple surgeries, I was really trying to figure out what was happening to me. About two years ago, I got enough nerve to start going through them and piecing them together into one, somewhat cohesive, piece. I thought this would be easy to do since I am both verbose (annoyingly so) and a researcher (of OCD caliber). I had lived through Henry’s medical crises, surely I could retell it. However, I often found it impossible to bring back the emotions of those years. It was if I could recall the events but not who I was during those moments. Those were the chunks missing from journal entries, the parts I was yet unwilling to consider. Luckily, I had friends who nudged me to write first for myself and then, if this reached a wider audience, so much the better. For these people I owe a great deal.

Meredith and Jenny, Miranda and Misti, thank you for reminding me that all mothers crack and those trying times are only worth it if you can crack jokes about it later. Thank you to Sylvia who organized hundreds of my emails and journal notes that, before her kindness, lived in a dilapidated box. Deena and Goldie reminded me to remain faithful. And for the dozens of fabulous women in my life who are guilty of spoiling Henry rotten. My son has an brigade of fairy godmothers. Robin, Tammy, Stephanie, Susie, Connie and Susan – my front line girlfriends who swooped in to care for all of us. I adore each of you. Heather, forged of iron with a marshmallow center, you amaze me. And for Wendy, who set us on the path to Stanford, which led us to St. Louis, and finally home with a healthy boy.

Ned, Gwyn and Ian, thank you for letting me share this story because all of us got Henry to where he is today. Gwyn and Ian are awesomely awesome kids. I fought so hard for Henry because I could look at these two and see he would also be filled with unbelievable potential. Ned, Henry adores you and one day he will know how you sacrificed all you had to see him thrive.

I can’t seem to find the right words to thank my wider family. I was raised by a mother who taught me compassion and resilience and a father who instilled in me a “suck it up” attitude. Grandpapa, Jean, Patricia, Andi, and the Weathers clan -- always calling and praying, reminding me that the miles between us truly didn’t matter. Mil gracias to Evie who often set aside her life to be the loving tia we needed. Thank you to my grandmother who helped this vagabond finally find a home in the wide world. And for Martha, my safe harbor in so many stormy years.

Thank you Jack. You are pathologically patient, overseeing our chaotic home front while I hide away to write. You are steadfast and you are mine. To my bonus kids -- Kelby and Gabby -- you made it utterly impossible for me not to fall in love with you, also.

I thank, with a full heart, my church, St. Paul’s Episcopal Cathedral of Oklahoma City, for becoming my tribe. Your generosity is a testament to agape. I am also fortunate for my professional colleagues who showered my family with gifts, leave time and prayers.

Henry, you are mighty. Your spirit has touched hundreds of people. I will always be proud of who you were and who you will become. Thank you for fighting so hard to stay with us.

I reserve my biggest thank you for Pattye, my fellow “heart kid” mom. Pattye took me under her wing when Henry was born and remains the mother I turn to for advice, solace, courage and red wine. She nurtures and battles in equal measure. My friend reminds me of an old Oklahoma saying, “Sometimes you just got to put on your big girl panties and take charge.”

Excess Baggage

If a mom can stop fixating over the guilt of having a critically ill child, it is time to obsess over the damage she has done to her other children.


For Henry, I have neglected his siblings. No bones about it. I have left Gwyn and Ian behind to seek treatment for Henry in other states. We’ve celebrated Gwyn’s birthday at the hospital hotel. Twice. My older two are constantly asked about their brother, told that they must help out, be patient, stay with grandparents and friends.

One mistake I made was to tell adults bad news about Henry’s health before I broke it to my kids, probably because I was cowardly. When Gwyn was in the fourth grade, it began to dawn on us Henry needed a transplant. My daughter found this out not from her parents but at school. I had told a teacher’s aide in Henry’s class about this possibility and the news spread to the point that one of Gwyn’s classmates asked her about it. She came home both angry and scared. I hadn’t trusted that she could handle the information and now she didn’t trust me to be up front with her.

At some point, I wrote:

I think it is fair to say that my kids would benefit from some counseling. God knows I need it but when do I manage that between Henry’s needs, raising a family and working? I choose to ignore my emotional crevice because I believe I can handle it. I’ll be fine as long as my child gets to live.

Gwyn and Ian have coped with Henry’s constant medical needs in ways I do not yet know. I always disliked that mindset that children as “so resilient” and can handle things better than we adults imagine. The truth of the matter is that Ian and Gwyn survived, as best they could. But it would be insensitive of me to say that watching their brother’s struggles and their parents’ constant worry did not mark their identities.

My two older children are night and day. Gwyn is very academic and an advocate for all things she finds unjust in this world. She’ll nag me to send money to African school girls, chastise me for using plastic grocery bags. Gwyn appears very self-possessed but is quite fragile on the inside. I often wonder what she will be like when she starts dating – part heartbreaker, often heartbroken. Ian is the most affectionate of children but also running amuck with imagination and questions. I have never seen him cry about Henry and he very rarely asks questions about him. Instead he wants to know why he can’t taste his tongue and why God didn’t make any Oklahoma volcanoes.

In a journal, I confessed:

There are questions I imagine my older children have that frighten me: “ If I were sick, would I get more attention?” “ Do they love Henry more than me?” “ Why won’t God save my brother?” “ Why can’t Mom spend more time with me?” “How long do I have to stay in the waiting room, live in this hotel, be shuffled between relatives and friends?”

The worst question was not imagined but spoken aloud by my daughter one day. She asked, “Mom, why didn’t God give me part of Henry’s broken heart so that I could take away part of his sickness?”

The only advice I can impart here is to appoint advocates for your other children – godparents, aunts, grandpapas. They are the ones there to witness your other children’s lives while you are focusing on the one struggling to survive. These adoptive caretakers are there for more than just doing kids’ laundry and cheering at the t-ball game. They serve as confidantes and safe harbor. In our situation, I asked that the children’s two aunts to be the ones Gwyn could call and say whatever she wanted to, knowing her feelings were safe with them. Ian was offered this option too, but the only person he wanted to call was Spider-Man.

I also asked St. Paul’s clergy to keep an eye on my kids. I even asked our clergy if they thought Gwyn and Ian would benefit from some counseling, especially to explore how their understanding of God was impacted by having Henry for a brother. Mother Susan looked at me in a loving way that said, “you don’t have any idea how badly you need counseling.” I have to be honest here. I really regret that I did not get family counseling during the seasons when Henry was home and doing moderately well. If I were to write a family case study for a counseling evaluation, it would say:

Ned and Erin have been married for more than a decade. They have three children, Gwyn, Ian and Henry. Henry was born with serious heart defects requiring multiple surgeries and extended hospital stays. His long-term outcome is not known. The other two children are in good health, are good students and participate in their church and extracurricular activities. Erin is considering a divorce but feels like her family cannot sustain further stress . In the last few years, Erin’s only sibling died at a young age, as well as both of Ned’s parents. Ned has endured two job lay-offs and not worked for a few years. Erin is working as a graduate assistant and completing her dissertation. While they have a supportive family network, all relatives (save for Erin’s grandmother) live out of state or overseas. Ned and Erin have discussed marital therapy but not sought counseling. They argue about money, sharing household responsibilities and recognizing the efforts each spouse has made. They feel that their strongest bond is supporting one another during family deaths and Henry’s hospitalizations. The family has endured considerable trauma and sorrow.

This family needed counseling. We all needed to grieve privately and together and we needed the tools to know how to process what was happening to us. Some of the best advice I ever received in this matter came from Chaplain Hal at St. Louis Children’s Hospital. “You have to mourn for the loss of your child’s good health.” I had never thought of that. I thought I would mourn if Henry died but until that point, I didn’t have time or the energy to feel bad about what was happening to me. Grieving, being angry, feeling desolate was self-indulgent. My job was to be strong for Henry, try to make it up to Gwyn and Ian when I was around, and put forth the most optimistic face I could to family and friends. Notice how being strong for Ned was not a priority. In my mind, we were in the same trench – he’d just have to deal with the ugly, irrational, bossy, weepy, manic and annoying sides of me.

You have the right to mourn. You have the right to be pissed. It is natural, and I have seen it amongst all of the PICU moms I know. You will feel guilty about your other kids. It’s common to have feelings of failure. As moms, we feel like our first job is to protect our family.

So protect them by acknowledging you cannot do this by yourself. If it requires a dozen doctors and nurses to care for your child’s physical crisis, then it also requires dozens of friends and relatives to tend to your family’s emotional crisis. Ask people for help because believe me, they keenly feel a desire to do so. For all the months, Ned and I were in the hospital with Henry, it never once occurred to us to ask our clergy to provide some counseling (numerous times they came for visits, prayer and communion). Of course, then I didn’t want to do a marital autopsy but I desperately needed a venue where it was okay for me to talk about what I was going through.

It can be hard to ask for the help you need. “What can I do for you, anything at all?” countless friends would ask and for the life of me, I couldn’t come up with a response then. I think I have them now.

Can you bring me some nail polish remover?

Will you bring coffee and go for a walk with me on Thursday mornings?

Can we talk about anything but what is going on in this hospital room?

Will you add us to your church’s prayer list?

Would take Ian to the zoo sometime?

Will you run by our house and bring Ned’s pillow?

Can we just sit here and not say anything?

My family will always be remembered as the one “who has the kid with the heart transplant.” It meant that a good deal of our lives were up for public viewing because hundreds of people knew what was happening to Henry. This family is colored by sorrow as we are by joy for what we have survived. We could have done a better job of taking care of one another.

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.

HLHS: Henry's Little Heart Sucks

Hypoplastic Left Heart Syndrome or HLHS is a bounty of bad news. It is one of the gravest heart defects where the structures on the left side of the heart are underdeveloped. There are differing levels to which the underdevelopment can occur but all HLHS children are, upon diagnosis, referred for cardio-thoracic surgery. You simply can’t live long with only part of your heart working.

I often referred to Cincinnati Children’s Hospital’s website (http://www.cincinnatichildrens.org/) to better understand Henry’s HLHS. To varying degrees, HLHS children have hearts that:

• Are missing or have a severely underdeveloped left ventricle. A ventricle is one of the heart’s pumping chambers. A normal heart has four chambers or “rooms:” two upstairs called the left and right atriums and two downstairs, the left and right ventricles. Right ventricles receive oxygen-poor (venous) blood and pump it to the lungs. The job of the left ventricle is to pump oxygen-rich (arterial) blood into the aorta. The aorta is the passageway way that moves this oxygen-rich blood from the left ventricle out to the body. When you look at diagrams of the heart, the blue parts are the ones moving or pumping oxygen- poor blood. The red parts are the ones for oxygen-rich blood.
  
• Both the aortic and mitral valves are underdeveloped, narrowed or completely closed. A heart valve is simply a doorway that allows the blood to flow in only one direction. The aortic valve pushes blood from the left ventricle into the aorta so that it can be sent out to the body. The mitral valve allows blood from the left atrium (upstairs) to be pushed into the left ventricle (downstairs). Then the mitral valve closes so that oxygen-poor blood does not flow back into the atrium. In HLHS cases, the mitral valve does not operate properly and oxygen-rich and oxygen poor blood mix. This means that some blood that needs to be sent to the lungs for more oxygen never arrives because it has flushed back into the atrium. Therefore, HLHS kids are always working doubly hard to get all the oxygenated blood they need. Their right ventricle goes into overdrive trying to compensate for the left by both pushing blood to the lungs and doing its’ “regular job” of receiving oxygen-poor blood from the body.
  
• HLHS kids also have septal defects. A septal defect is simply a “hole in the wall.” This means that blood can seep between the left and right sides for both the atriums and ventricles.

Or, to put it another way, HLHS is the worst highway construction you can ever imagine. Traffic tie-ups, dead-end routes and potholes. Blood simply cannot move the way it needs to bring oxygen to your child’s body. It is exhausting on both the heart and lungs that are desperately trying to compensate.

Henry’s HLHS was graded as “severe.” I find this comical because it’s not like a diagnosis of “mild HLHS” is something to cheer about. Henry’s left ventricle was essentially useless, just excess tissue flapping around in his chest. His aortic valve deteriorated rapidly because it was never normal to begin with and he had septal defects needing repair.

So, how in the hell do you repair all this? Currently, there are two medical routes parents and doctors consider. The first is a heart transplant and newborns and older children are successfully transplanted. But let me add caution to the term “successful.” A successful heart transplant means your child will be on anti-rejection medicines for the rest of their lives. These are also called immunosuppressants and they are the drugs needed so that the body will not reject the new organ. An immunosuppressant simply limits the immune system so that it won’t attack the new organ. Let me be clear: your child must take these every day, absolutely as directed because the body will naturally try to rid itself of what it considers “foreign matter” --- even if it is a heart. Anti-rejection meds bring forth a whole other set of medical issues. Heart transplanted children are more susceptible to hardening of their arteries, infections, drug reactions and certain types of cancer. You have to take precautions with live vaccines, their diets, other medications and use sunscreen obsessively. Finally, these days a “successful” heart transplant means to doctors that your child has a survival rate of 12 to 15 years.

I know that hardly sounds like a success and the first year after transplant is the most critical. Some children simply cannot survive with their new heart and the powerful drugs they must take. There can be some awful complications. But keep in mind that transplant teams do retransplantations because they believe they extend the time and quality of a child’s life. A retransplantation is simply when your child receives a second donated heart. Secondly, each year heart transplantation treatment improves. The surgical procedures are refined, drugs are improved and recovery treatments get better.

HLHS kids can also undergo a series of surgeries to compensate for their underdeveloped hearts. In Henry’s case, as in the case of many HLHS kids, we had this surgical series done and then still needed a transplant. That is because HLHS cannot be cured. Doctors still lack the capacity to rebuild such deformed hearts despite their heroic efforts. They can adjust things in your child’s heart to improve the blood flow but, to be blunt, you can’t build the Taj Mahal when all you have is a shack to start with.

HLHS surgery is usually done in three staged surgeries. In the first surgery, called the Norwood, doctors attempt to make the right ventricle take on the job of the deformed left ventricle: pumping blood back to the body through the aorta. At the same time, surgeons take a segment of the pulmonary artery (which takes blood from the heart to the lungs) and use it to rebuild the underdeveloped aorta. This way the blood flow to the body is increased. Lastly, surgeons build a new route from the right ventricle or directly off of an artery to send oxygen poor blood to the vessels heading to the lungs. The Norwood is considered the most difficult of the HLHS surgeries but it is critical to increasing the overall blood flow to the lungs and the rest of the body. This surgery is often done within weeks or months of birth.

The second surgery, the Glenn, is usually done within the first year of life. For the Fontan, the last HLHS surgery, doctors usually wait until the child is three or older. During the Glenn, the major blood vessels from the upper portions of the body (arms, chest and head) are cut away from the heart and attached directly to the pulmonary artery. This way all the oxygen-poor blood skips sloshing around in the heart and instead goes directly to the lungs for its oxygen. A successful Glenn procedure reduces some of the pumping stress on that right ventricle. The Fontan, is essentially the same surgery but for the lower half of the body.

Many HLHS children do great with these surgeries, coming out of the OR with oxygen rates (O2 sats) in the 90’s instead of the 75% they went in with. Nonetheless, your child still has a deformed heart. They may be much more active and need less meds but doctors will always want to poke around in there and see if anything else is deteriorating.

This is exactly what happened with Henry. We came out of the Fontan astonished to see Henry had O2 sats of 94%. Within two months, those were falling off. Within a year, Henry was back down in the 70’s with our cardiology team telling us that his deformed aorta was getting worse. “Successful” HLHS surgeries mean your child is functioning at the best level possible given that they only have one ventricle.

That being said, doctors estimate that some HLHS patients who have undergone these repairs will survive until middle adulthood. I know that, as a mother, that is still not enough time. But think how much heart surgery has improved in just our lifetime. Thirty years ago, HLHS was a death sentence for most babies and pediatric heart transplants were not faring well either. By the time our kids reach adolescence, there could be better surgical methods, better drugs and longer lives.

Again, I credit Cincinnati Children’s Hospital’s website in helping me better understand HLHS. It is a very complicated diagnosis and I don’t think anyone is expected to understand all that has gone wrong the first time they hear about it. Find a reputable website (or book or medical professional) and return to it often, learning about HLHS in steps.

HLHS is not kind. It requires multiple surgeries, long hospitalizations and powerful medicines that thin the blood, regulate heart beats and open up lung’s air sacs, amongst others. It is not a condition that can be cured but surgeons can do their best to compensate for your child’s birth defect. Some kids have the HLHS surgeries and improve greatly, others make it through long enough to go on the transplant list. Either way, it sucks.

Home & Hospital 2002-2006

With Henry home, we also gained a lot of medical equipment including the “monster” – a stationary oxygen machine that was nearly the same size as Henry’s crib and emitted sounds similar to an industrial grade generator. But, between administering eight medicines daily and stomach tube feedings (aka g-tube), we did find a normal “new kid” routine. Henry napped with his brother on the couch, hid out in the baby sling for runs to the grocery store and endured his big sister fretting over his unruly, burgundy hair.

It took a while for the weeks of sedation Henry had to fully leave his system. For the two months he was in the hospital, he spent most of it in a drug-induced coma. But once it wore off, Henry became very alert. He would look around so comically, less than impressed by the lot of us. Henry had this way of looking at you that somehow sweetly said, “Don’t screw with me.”

We avoided some of the less pleasant aspects of having a newborn. Henry often slept through the night because that is when we ran the big g-tube feeding that pumped his belly full. Although when he woke, there was often colossal poop. He never had colic and save for the fact that he had a really awful heart, this kid was healthy. He rarely had a cold and just a few ear infections.

Henry was developmentally delayed. And he never crawled, which is considered an important milestone. But, given everything else we had to worry about, I let that one go. It just seemed that he lacked the muscle development to manage it. Instead Henry scooted on his butt for miles, leaving shredded diapers in his wake.

By the end of summer, we got to say goodbye to the monster and Henry fed himself entirely orally. He was a easy going kid, much like Gwyn. In the fall of that same year, we returned for the second of the Hypoplastic surgeries (the Norwood comes first , followed by the Glenn and Fontan. Sounds like a cheesy boy band). I dreaded taking him back there. At that time, I wrote:

Three weeks back in the ICU. Henry bombs extubation again and again. I find myself bonding with nurses and residents and avoiding friends.

Here are the things I didn’t know, didn’t care to know. A fungus can grow in your heart and it is almost always fatal. Post-operative staph infections can set in so fiercely that the burn unit has to be called in to tend to your child’s wounds. PICU nurses are stern and compassionate. They aren’t angels but they are merciful. Your child can have massive heart defects, a blood clotting disorder and there will never be an explanation for why. Some children die alone, some die in unbearable pain and some children walk out of the PICU with smiles and stickers and are never seen there again.

Henry’s surgery went well but he had the same complications – getting off the ventilator and staph infections. I became a Nazi about people washing their hands when they came in Henry’s room because he was so damn talented at picking up infections. In the end, we stayed only three weeks that time but, post-surgery, his O2 saturation rates improved only slightly. The doctors began warning us that Henry’s valves were weakening. I could not worry about that – I was still obsessed with compensating for the missing ventricle.

I also worried about other things. Like I needed to stay in school and work as a graduate assistant. I refused to give up on my PhD for two reasons. First, I knew I needed the earning power the degree could bring to the family (and, let me tell you, we are so filthy rich now that I can often buy groceries and pay the electric bill in the same week). But, I also refused to quit. There was a part of me that was in denial that things were so bad. I so badly didn’t want to wallow that I did everything I could to keep up the family status quo – three kids, two working parents with just the minor detail that one kid kept needing heart surgery.

Of course, the bottom fell out of this plan. Ned was laid off from his store director position after giving them years of service and opening several branches. He was never given an exact reason why he was being let go but I felt certain that when the company saw Henry’s medical bills coming in (I think his first hospital stay cost insurance $240k), they reconsidered how valuable of an employee Ned was. Am I bitter? You bet.

Ned was not a stellar stay-at-home dad. Of course, I had never been great on that front, either. But so much of Ned’s identity, like a lot of men, was tied up in being a provider. It took him several months to find a new job and when he did, the work hours were even worse. I began to realize Ned and I were often at odds with one another. We got along great as friends but living together was a whole other dynamic. My marriage was derailing and I didn’t have the energy or, sadly, the interest to do much to stop it.

One bright spot in that first year was supposed to be Henry’s birthday. We planned a blow-out bash at our house and invited dozens of friends. Then, that morning, I woke up with vertigo, which I have never had. Vertigo is like the world’s worst hangover, coated in nausea. I couldn’t function and eventually had to go to the ER. Ned and our mothers pulled off the party without me there for most of it (as I refused, while dry heaving, to cancel the party). Henry appropriately smeared birthday cake over his slightly blue face and the other kids massacred some piñatas. I sat on the porch, clenching a lawn chair, with my head between my knees.

I try to write my children letters for each of their birthdays. Let’s do the math. I have three kids who are twelve, ten and seven. I have written eight birthday letters, total. Yes, I suck that much. Henry’s first birthday card was a postcard with a baby gorilla on it. I wrote:

Happy 1st birthday beloved Henry!

This postcard reminds me of you when you were first born – lots and lots of black hair. Thank God, I thought, one that finally looks like me! Of course, your dad’s genes have taken over and now you are a flaming red head. I adore you – you are the best thing that ever happened to me. I grew up tenfold in the first dramatic year of your life. You have been through hell and come further than any of us expected. You are the riches I never imagined in my future, the perfect gift I hardly feel deserving of.

I love you, Mom.

We had Henry at home for two, rather uneventful years, knowing that before his fourth birthday he would have the third of his staged surgeries. I enrolled him in a preschool for children with developmental delays, took a new job, tried to finish up my PhD coursework. When it came time for the next surgery, we were hopeful. All we had to do, we told ourselves, was get through this last slated surgery and we would pretty much be home free. Because this was the choice we had made. When Henry was just days old, Dr. Ward took us aside and said we could go the surgical route or choose to put Henry on the transplant list then. We wanted them to work on the heart Henry had come to us with. Plus, we questioned whether they could find a heart that small and we would have to choose which city to go for the transplant.

This was my mistake. There is no doubt I should have sought a second opinion and asked more questions. Except that I wasn’t really functioning then. Dr. Ward was offering us two alternatives but I could only focus on one. My mind was made up that we would commit to the surgeries. Heart transplants were heroic measures for basically terminal children. I couldn’t think of Henry that way. In my heart, I knew he was dying but my brain refused to rationalize that.

Henry did not do well with this surgery (2005). They had trouble getting him off bypass during surgery and his leaky AV valve looked worse. Once he was back in the PICU, I was him for just a while before I was rushed out of the room. Henry began bleeding out, presumably from an elevated level of blood thinners, and the surgeon had to reopen him right there. Ned had left briefly to pick up Ian and Gwyn. For what seemed like an eternity, I stood down the hallway where I could see the doctors and nurses working on Henry but no one would tell me what was going on or, more importantly, what was going to happen. A church friend, Robert, happened to be there with me. I was pacing and crying and shaking and after a while, he just had to leave. It was too much for him to witness and part of me wanted to go with him. For me, this was the scariest moment. When Henry stabilized, I returned to his room and had this inner monologue with him where I literally threatened his life if he ever did that again. At the time, it made sense. I was livid at his heart or this one freakin’ valve for not giving my kid a break. There were many times when I understood Henry might die but that night I believed he would.

But things, as they always did, turned around. This time Henry took only two attempts to extubate and we were home again within three weeks. He seemed to grow faster and by this time I had enrolled him in a special education program at his siblings’ elementary school. None of the children were like Henry – profound autism, that one wheelchair-bound, another nearly blind. Henry’s issue was that he was very small, had a lot of learning to catch up on and was very defiant. We started calling him Henry the 8th because the boy could be tyrannical. He had the most amazing teacher and aides but Henry cared about only two school-related events: going to the cafeteria and riding the bus.

Living between the PICU and real world became normal for us. We had three children. Gwyn was an ace student and soccer player. Ian was uber-affectionate but really had no desire to learn reading since he wanted to be a thief or a Chinese cook when he grew up. Then there was Henry, the family insurgent, seeker of mayhem, the child who, sooner or later, would wind up back in the hospital.

You had to look closely at Henry and know his story to be able to detect he was ill. Although he was five years old, he looked like a toddler. His lips, nose and fingers always had a blue tint to them – the result of his low oxygen rates. And he had a big belly. For a long time, none of us were sure if that was related to the heart or his binge eating. Basically, my child looked like a slightly blue, pudgy elf. With spiky red hair.

We got to go a year without surgery until they called Henry in for another heart catheterization. A heart cath is routinely done on CHD kids. A thin, flexible tube, often fitted with a camera, is inserted through the child’s groin and up a blood vessel to their heart. The doctors planned to do some diagnostic pressure readings on Henry, look at his heart and coil some collateral blood vessels. Guess what? When your circulatory system does not work the way it should, your body has the ability to grow small, “collateral” blood vessels to compensate. Problem was that the surgeons did not want Henry’s body to override all the hard work they had done and so those vessels have to be coiled – essentially cut off.

A heart cath is no big deal given everything else we had all been through. That morning Henry ran amuck up in the cath lab, rifled through the nurses’ filing cabinets and set off an alarm. The nurses and I agreed we could not get this kid sedated soon enough.

We expected good news. Neither Ned nor myself believed Henry had gotten any worse. The blessing of folly, faith or somewhere in between. When Dr. Overholt came out, he cautioned us. The repairs they had done so far were only temporary measures. The surgical interventions were not holding up well and that damn aortic valve kept weakening. Sooner or later, this heart could not endure a growing boy.

Ned and I didn’t know what that meant. Henry’s case would have to go back to conference, a new plan of action needed to be established. In the meantime, we should go home and wait to hear from them.

We took Henry home and he didn’t seem to deteriorate at all. He did run away a lot until I installed a $700 steel front door. He liked to go out front with his pink toy vacuum and Elmo slippers and obsessively clean the driveway. He jammed action figures in the ice dispenser and toilet. He despised Sunday school, adored his sister, ate cereal by the fistfuls. He seemed like an average two year-old except that he was nearing five. Still just 30 pounds, taking eight meds a day and with this bloated belly that did not have an exact diagnosis. Maybe it was protein losing enteropathy where fluid is retained in the abdomen due to heart failure. Or, the doctors, conceded, maybe his liver was starting to go bad because of the heart failure. All I heard was heart failure. I didn’t give a damn why.

Journal III: June 2002

12 June 2002
A list of Henry’s wounds, bottom up:
· IV line in left foot.
· Blood blisters on both thighs from infection.
· Heart catheter wound to femoral artery.
· IV line sutured into groin, an evil triton looking contraption which Henry has already pulled out once.
· Stomach (feeding) tube.
· Two chest tubes, each one having been infected at some point.
· Incision from under his left armpit to the middle of his back where it looks like they used a machete to do his first, failed, BT shunt. Site of the original staph infection.
· Chest scar (second BT shunt) – a long thread from his sternum to almost his belly button.
· Stitched up left wrist for an IV they couldn’t thread. I guess this was from when they thought they were taking him back to surgery yesterday.
· And, of course, the ventilator taped to his face which isn’t technically a wound but pretty damn distressing to see anyway.

But, my child does have great hair. Thick, lush almost black. At the roots, it seems to be turning red.


14 June 2002
This is the world I live in. Ned’s been sleeping at the Parent Hotel and I am covering days. I needed to spend some more time with Gwyn and Ian. I take Ian to preschool. A Honda zips into the parking space next to me. I watch the mother jump out and grab her toddler whom she has let stand in the front seat for the car ride. I am so pissed. Decapitated by the air bag. Hurled through the front window in a 30 mph wreck. Apparently this mother has not considered the multiple ways her child could die.

We find out that Henry may be Protein C Deficient which means his blood clots too quickly (this would explain some of his surgical complications, especially the BT shunt they had to redo). I am delighted to hear that Ned has to go for a blood test because, pathetically, I want something else besides my own crappy womb and metabolism to be at fault here. I have to go, too.

Blood tests come back. Neither one of us have it.

15 June 2002
Early Saturday morning. I drag the kids out of bed to meet Ned at the Parent’s Hospital. Supposedly they are going to try extubation again. Maybe the third time will be the charm.

When I get there, Ned and I are combative, more with stony resentment than actual words. I’m livid that his two days off this coming week will be consumed with him traveling for business. He should be here for Henry, for me. His company should understand the crisis we’re in. He’s pissed I can’t remember that we still need an income and, more importantly, insurance benefits. Neither of us seem to notice Gwyn and Ian sitting in the hotel room , eating donuts and watching cartoons, waiting for their lives to resume.

Later, Henry extubated. But not doing well.

16 June – Father’s Day
Ned has had some sort of breakdown. Or maybe it’s a breakthrough. He’s been here in the PICU almost 36 hours. Slept in the recliner. Skipped out on almost all of work. If they fired him now, I think part of him would be relieved. There is something about this time, when we’re fighting for Henry to stay extubated, where Ned is panicking but is also bonding deeply with his boy. Maybe, before, Ned’s focus had been on keeping me going and Gwyn and Ian on some sort of schooling/sleeping/feeding schedule. Now that we can hold Henry, Ned sits in the rocker with him for hours.

Yesterday he collapsed. Very angry and weepy and not able to articulate what had set him off. As is he needed to justify what was breaking him. We’ve understand the cumulative effect of our enjoined lives to this point – burying my sister and then his father this past year, especially. We knew only the two of us understood each other’s sadness. We can be jackasses to one another when better, richer and healthier. But, in the trenches, I am acutely aware of how much I love him.

I’m learning how imprecise doctoring can be. Each doctor has his own prognosis and treatment suggestions. Clarke wants to reintubate this morning, Knott-Craig thinks that’s “foolishness.” He tinkers with Henry all day. Are his wife and kids pissed that he is spending Father’s Day here or are they just resigned to the fact that his professional calling supersedes time with them? Knott-Craig adjusts the bed temperature, when medicines are given and the angle of Henry’s neck under the oxygen hood. If we can get through today, he claims, “We’ll be home free.” Of course, this is no way means we are heading home. He pats my shoulder as he leaves, compliments me on our classical music choice for the day. I realize I am desperate for him as a young girl craves her father’s attention. My own father has not come to see Henry. He tells me it is too much for him to witness after losing his other child.

Some people think Henry will die, that sooner than later this mutilated heart will stop its sickly thumping. Many of the doctors have no idea which way it will go, baffled by both his complications and resilience. A few, namely Knott-Craig, believes Henry will eventually go home but that time is Henry’s best medicine. That we must have more faith in Henry than we do in medical expertise.

19 June 2002

Malley went home yesterday. And another PICU kid, Mason, is dying today. Knott-Craig says we will be going home within a couple of weeks.

Now, when I hold Henry, he looks like he might forgive me. He goes after the pacifier with a voracity that makes me scared to nurse him. I guess I need not worry about that since he will have the feeding tube for a while. I get to see his sweet round face without any tape or tubes.

The geneticist comes by today to tell us they cannot find anything on our DNA panel that would indicate our genes were the obvious cause of Henry’s heart defect. They first met with us three days after my c-section. I remember sitting in a wheelchair next to Ned answering their long series of questions. Yes, I had a mild heart murmur but we thought that was because I had scarlet fever as a young girl. Yes there was heart disease on both sides of the family but the lives that claimed were of grandparents whose lifestyles complicated their heart health. Was there Down’s Syndrome in our families, were either of us Sephardic Jews, had I taken meth when I was pregnant? My favorite question, which the genetics team asked at least three times , was if Ned and I were cousins. I am 5’11, dark and olive skinned and pretty much look like a giraffe. Ned is 5’8, pale skinned, Nordic blond and barrel chested. Hell, we’re barely the same species.