Our Lives Before

The best place to start is who we were before Henry. It’s the part of the story that seems so mundane. I certainly had no idea my life would be submerged into a world of congenital heart defects (CHD), pediatric intensive care units (PICU) and organ donation.

This is who I thought I was. I was raised in Latin America where my parents had numerous posts at US embassies. I graduated from high school in Costa Rica and had my heart set on Texas A&M for college. There I met Ned my first week and we dated most of our freshman year. Then I thought it wise of me to have about a dozen more boyfriends in college. In the end, Ned and I got back together and were married in 1995 after I completed a teaching program at the University of Texas. I taught high school for a year and Ned moved up the management ranks for a sporting store chain.

Within the first year of my marriage, I was pregnant with Gwyn. I quit teaching and took on stay-at-home-mom status. Eventually, I would completely tank at this. But those first years, with just the three of us pinching pennies, were very happy. In 1998, we moved to Oklahoma City so that I could be closer to my grandmother. Ned remained with the sporting store and while he worked long hours, I sat at home and wondered what I should do next – have another baby or go to graduate school?

I decided to do both. I started graduate school at the University of Oklahoma, studying adult and higher education, the same semester I was pregnant with Ian. Being a student again helped me feel more engaged with the world around me. By the time Ian was born, I had decided to go all the way with a Ph.D. and started working as a graduate assistant.

Ian’s cesarean delivery in 1999 had several complications and he stayed a week in the NICU. Additionally, he was born with just one kidney. I was seriously shaken by the experience. Turns out having just one kidney is often not that big of a deal and Ian has never had any repercussions from this birth defect. His only medical regimen involves an annual visit to the urologist for an ultrasound. Then Ian is off to school to share the ultrasound pictures, proudly announcing that while he may only have kidney, he has two perfect “tentacles” (testicles).

I continued studying and working as a graduate student, splitting my week between home and campus. Early on, Gwyn exhibited her creative, often bossy, side and Ian was only too happy to serve as her minion. Soon after Ian turned two, I decided it was time for our family to join a church and chose St. Paul’s Episcopal Cathedral.

I sensed God was punishing me for my lack of church attendance because I became violently ill the moment I entered the sanctuary. I felt certain it would be bad form to puke on the lovely embroidered kneelers that the church ladies had tended to for a century. The thing about the Episcopal Church is that there is a lot of audience participation. We may not be shouting “hallelujahs” or dancing down the aisle but we are standing, sitting, kneeling, sharing the peace and singing those upbeat eighteenth century hymns. All I wanted to do was shove Ned off the pew, lie down and make the kaleidoscope of stained glass windows stop spinning.

I stood up one more time, began to sway in utterly non-Episcopal fashion, when a man behind me steadied me and asked me if I needed to step outside. Great, I am being kicked out church after being there all of thirteen minutes. I went out to a quiet garden on that beautiful fall morning. The nausea subsided. With my head between my knees in what God must have deemed was the best prayer position I could assume, it came to me. I’m pregnant.

And just barely. With two small kids and the work/school schedule that Ned and I were trying to keep, one is very certain the last time any frolicking took place. I was exactly one week knocked up.

Henry was not planned but I certainly wanted a third child. When we left the church that morning, I told Ned to stop by the drug store so that I could pick up a pregnancy test. He thought I was nuts, that even if I was pregnant , there was no way I could know that soon. I love how the men folk are always explaining female biology to us. That pregnancy test came back so positive it was quite possible I was carrying a litter of kittens.

I was delighted and Ned was stunned. And then he totally got into the idea and I freaked out. Early on, I had an unrelenting sense of apprehension. Maybe it was because of what we had gone through with Ian’s delivery. I always believed I had zero maternal instinct. I’m the mom who fails to buy her kids snow boots or put sunscreen on them. I love being a mom but I could not say I was hardwired to do a great job of it. But I believe my worry had more to do with God preparing me. And so, when we went for our second trimester ultrasound and the room got frighteningly quiet, I already knew. The technician stepped out to find the doctor. Henry was moving a lot so I knew he was still with us but I needed to know what parts would be missing this time.

The answer turned out to be that the left ventricle of Henry’s heart was incomplete and would probably never be functional. The entire organ looked malformed –flimsy valves, a coarction and septal defects. The maternal fetal specialist could not tell us the full extent of the damage but that heart surgeries or a termination were our only options. At eighteen weeks, with our family smitten with this boy, our decision was already made. For the record, I am pro-choice. This was mine.

We were told Henry’s terribly constructed heart was just a matter of fate. That is a lot for a mother to swallow. I needed a reason why and decided I was at fault. I could not grow healthy babies, probably due to my diabetes. When I was pregnant with Gwyn, I was diagnosed with gestational diabetes. I had the misfortune to remain Type I diabetic after her birth, which is not common. Pregnancies of Type I diabetic women have higher incidence rates of birth defects (see: http://www.healthsystem.virginia.edu/UVAHealth/peds_hrpregnant/diabetes.cfm) but there are thousands of healthy babies born to diabetic women each year. With both Ian and Henry, I had maintained good blood sugar levels. My endocrinologist never dissuaded me from having more children, she simply urged me to have an earlier ultrasound and monitor more blood sugar even more carefully.

I had learned to live with an insulin pump as a diabetic and rather naively thought that Ian’s missing kidney was the worst damage my body would do to my children. When I left Henry’s ultrasound that day, I hated my own body. Why was I such a toxic waste site for incubating children? Clearly, my disease, eggs or uterus were corrupt.

During my pregnancies, I kept journals. I intended to give them one day to whatever kid happened to be inhabiting my uterus at that moment. Two months before Henry was born and after we had learned about his heart, I wrote:

Henry,

Have a sound heart. The doctors say it is defective. You are so peaceful in me. You even make me (me!) tranquil. So now you need to prove them wrong, come save your mother, be the baby boy we can bring home. Fat, happy, blood flowing however it needs to, peace-bringing Henry.

Insisting that my child-in-utero was some ethereal , relaxed being must have offended Henry because not long after he became obnoxious. Hurtling himself against the insides of me. I would not have been surprised if he was trying to build an aircraft carrier in there. And I started having pre-term labor and was sent to bed. Two days before our scheduled c-section, I wrote:

I don’t have any decent reasons for why I have not written more often. I hardly know what to say. It’s not that I didn’t write in case something went wrong. Something has already gone wrong. I am beyond in love with you but also consumed with self-indulgent guilt and mourning.

I am in bad shape physically, too. I’m immense with gallons of amniotic fluid plus the estimated 8 lbs of you. You’ve gone from mellow child to hell knows what you’re doing in there. All I feel is your head lodged in my pelvis and your chunky butt twisting underneath my heart. You terrify your father with the way you move in me. He thinks I may explode.

You’re to arrive two days from now, May 7. I really wanted a Cinco de Mayo baby but the doctor has a colonoscopy planned for himself today (as if that is a legitimate excuse). I am sad to see you going, despite the miserable pain. You’ve made it very clear that you don’t like pre-term labor, fighting back with each contraction I have. As if you are pissed off there’s any sort of expectation that you’ll have to move out of there.

For about six weeks, we’ve struggled day by day, sometimes hour by hour, to keep you in there. Almost every night, I lug myself to the couch at 2 or 3 a.m. Most of the time, I watch news special about serial murderers. Per doctor’s orders, I am taking pain meds and even a little red wine (Yes, your mother sipped a little while knocked up with you. Get over it.) If you become a very sedate axe murderer, you’ll know who to blame.

This is what I wished I had known then. It is estimated that one in one hundred children born in the United States have some form of CHD, meaning that CHD accounts for approximately one-third of all birth defects annually. Overwhelmingly, doctors cannot conclusively pinpoint why a fetal heart fails to develop properly. Some CHDs are so minor that they are never detected and many repair themselves within the first year of life. Other CHD children need one, two or several surgical procedures to improve the quality of their lives. It is also true that some babies are born with hearts that cannot be repaired. Here, some families are fortunate enough to receive heart transplants but others are not. There is the tragic irony that some children are just too sick to be placed on an organ donation waiting list. Others die waiting.

I doubt that, save for conjoined twins and septuplets, a uterus has been imaged more than mine. After that ultrasound, Henry had a team of doctors preparing for his arrival – maternal fetal medicine, cardiology and neonatology. Every week, I went in for another ultrasound and when I saw Henry he did not look sick or failing to thrive. He looked fat and hairy and almost always sucking on his two middle fingers. He was dreamy to look at, sweet, soothing even though I suspected a nightmare was before us.