My older son, D, is seven now. He is healthy and happy. You would never know just by looking at him how close we came to losing him before we got a chance to know him. You see, D’s heart didn’t form correctly.
When he was born, his aorta was hooked up to send the oxygenated blood back to the lungs instead of to the body, which needed the oxygen, and his pulmonary artery was hooked up to send his spent blood back to the body without any oxygen. Essentially, instead of having a single big circulatory loop that sent his blood to both the lungs and body, D had two parallel loops that kept the lungs from doing their job. This condition is called dextro-transposition of the great arteries (d-TGV), and without modern medicine, he would have died within a month of birth.
But that didn’t happen. Because the techs discovered the problem in a pre-natal ultrasound, the hospital was fully prepared for the risky birth. Nearly a dozen medical professionals were in the delivery room, and they rushed D to an emergency catheter operation to save his life before he was two hours old. This was followed by a seven-hour open heart arterial switch procedure in his third day, a smaller surgery to finish the repair a few days later, and amazingly, a complete discharge from the hospital on his eleventh day of life.
We are fortunate to live in a time and place with the ability to identify and fix these problems. We were lucky.
- We were lucky that my wife had a medical condition that meant we had extra pre-natal care, even though the condition doesn’t affect her daily life. Perhaps the d-TGV would have been found anyway, but there’s no way we could have missed it with all the extra care she had.
- We were lucky that we lived only three miles from one of the best hospitals in the country, if not the world. There were many children in the PICU (Pediatric Intensive Care Unit) that were from much farther away (a girl from Florida awaiting a lung transplant, a boy from South Dakota with another heart problem, etc.). It was so much easier for us and for our friends and family.
- We were lucky that a cousin had a townhouse three blocks from our house that she let my parents use while they were in town. She has since passed away, but her ability to share a house she wasn’t using at the time (due to her own health issues, unfortunately) made our situation easier.
- We were lucky that I had good insurance.
- We were lucky that we live in a time (after 1968) and a place (the United States) where doctors know how to identify and fix the problem. For all the problems the American healthcare system has, it is the best in the world for this sort of problem for those who are covered (this was pre-Obamacare). Really, this is saying that we were lucky that other people did hard work – it’s not luck that a solution was developed, but we were fortunate to be able to take advantage of their work.
- We were lucky that D’s surgeries were over within a week. There were lots of kids in the PICU that had been there for a long time when we showed up and were there for a lot longer after we left. There was one kid a few days older than D that also had heart surgery, but his condition was part of a larger syndrome that affects many of his organs and systems – he was looking forward to surgeries for the rest of his life. Everything in D was healthy except his heart.
- D was (and is) lucky that his parents are financially stable adults in a loving stable marriage, and that we have many loving friends and family. That was far from true of all the families in the waiting room.
Not all families are so lucky. For example, the day after D was born in a suite full of doctors and nurses ready to treat the d-TGV, a boy named Sebastian was born at a small hospital in Texas to parents who knew nothing about what was coming. Sebastian was airlifted to a big city hospital to take care of his heart, but his mother was left in recovery in another hospital in another town. Fortunately, Sebastian’s case turned out great, and his family shared many of the advantages we had (like being in the United States after 1968), but the entire situation was a much bigger surprise for them – we were able to prepare for the stress in a way they couldn’t. (Sebastian’s story was told on a Discovery Channel show called Surgery Saved My Life. It doesn’t appear to be available in full online, but you can see parts of it on YouTube, including the surgery that saved both Sebastian and D.)
The relative difficulty for Sebastian’s family doesn’t compare to the difficulty for a child born in the United States without insurance, pre-natal care, a loving family, and/or good birthing facilities. And even that pales compared to the situation of those in much of the world, where such medical care is simply unavailable.
People asked us what they could do to help, and there wasn’t really much that we needed at the time beyond what medical science, caring professionals, and close family and friends provided. But even now, three things come to mind that can help:
- Donate blood to the Red Cross – During the arterial switch procedure and with the bleeding that had to be fixed later, D lost all of the blood he was born with. If not for donations of other O+ donors, D would not have survived. If you are healthy and eligible, please donate blood to the Red Cross, and please make it a regular habit.
And yes, the Red Cross is prohibited by silly rules from accepting blood from men who sleep with men. I think we can fight to reform that government rule while still supporting the Red Cross’s life-sustaining efforts.
- Get good pre-natal care – If you or someone close to you is or could be pregnant, please get all the pre-natal care possible. With our pre-natal care, we knew what problems D would have, and we were in the right hospital with the right support staff to make sure everything possible was done. Without the pre-natal care that told us what to expect, his problem would have been detected at some point after birth, but possibly not until long-term damage had occurred. Please take care of new mommies and their new babies.
- Direct your gratitude and support where it matters – D’s life was saved by the expert and caring application of medical science. Without scientific progress, no one would have known how to fix his heart. Let’s keep our gratitude focused on those who should actually be receiving it – the doctors, nurses, and scientists who actually saved D’s life. Help children like D in the future by donating to hospitals, blood providers, and heart research facilities that do the hard work of solving problems through science, expertise, and human caring.