One year ago today was the happiest, scariest day of my life – the day our wonderful baby Ryan was born. While I was still about 5 months pregnant, we found out our still unborn baby had a critical, fatal (but fixable) heart defect called TGA or “Transposition of the Great Arteries.” Out of concern for our baby’s privacy, I’ve not written about him or used his photos in any public websites. That said, after months of soul searching, I can’t forget the hope a selfless mother’s blog about her family’s experience with her son’s TGA gave me. And I want to give other mothers the same hope I got. So, just this once I’m going to write about our experience with him during the past year.
I was 40 when I got pregnant. After years of fearing not meeting the right man in time, thinking I might be too old to get pregnant once I did (I was 37 when we got married), and multiple disappointments, suddenly without any outside intervention we were pregnant. The emotion was overwhelming: joy, gratitude and anticipation. When I was about 5 months pregnant we went into my obstetrician’s office for a routine ultrasound. While administering the test. after initially chatting and exhibiting her southern charm the technician suddenly grew silent. She kept looking at the blood flow (it’s color coded now, pretty amazing) around the heart, pushing so hard on my stomach it actually started to hurt. Next we were ushered into a normal examination room where a young doctor (ours was out delivering babies) came into the room and gave us the news: she thought our baby had a heart defect. I think she even named it. And we needed to go see a specialist at UCSD who had a better machine for a diagnosis. At that point we were terrified/in denial. I think we asked some questions but mainly felt stunned. How could we have waited so long for this baby to have an outcome like this?
After getting the TGA diagnosis confirmed we also learned I would have to deliver at a different hospital, one attached to the Children’s hospital because Ryan would almost certainly need immediate surgery after being born. Even though knowing about his diagnosis so far ahead of his birth was painful, it gave us the luxury of choices we wouldn’t otherwise have had: I chose a perinatologist for myself, plus Ryan’s cardiologist and heart surgeon before he was born. We considered flying up to my home town of Palo Alto if Stanford would have given us a better outcome but after researching and interviewing the the doctors closer to home, decided our options in San Diego were good. The heart surgeon we picked, Dr. Lamberti, had extensive experience, including a stint at Stanford. We were also able to work with the head of Cardiology at Rady’s, Dr. Moore. Usually normal people do not welcome the kind of grilling you learn to do at Intuit to get to root cause (we learn to ask five levels of “why”) but these docs not only answered all my questions, they did so with kindness and calm confidence you want to see from a person who is going to cut your baby open, stop his heart and start it again.
Up next: his birth