It’s been a wild week. Last Thursday Audrey and I learned that our little one likely has a Congenital Heart Defect. Specifically, she has an issue called Hypoplastic Left Heart Syndrom, or HLHS. HLHS is a situation where the left side of the heart is underdeveloped and can’t function properly. There is no danger right now while our little one is inside but when she starts to breathe on her own, if untreated it would likely be fatal in several days. 15-20 years ago, it would be fatal. Luckily, there are some risky, but apparently effective procedures that can restore a mostly normal way of life.
So what happened? Audrey’s now into her 22nd week of the pregnancy. At the 20 week Ultrasound, the Dr from the awesome Minnesota Birth Center thought he detected a 2-vessel umbilical cord and possibly a smaller left ventricle in the heart. While the Dr was formerly a Perinatal Physician, he hadn’t been in that field for a few years and recommended a second look. Audrey and I had to wait 1.5 weeks but we got in to see the staff at the Minnesota Perinatal Physicians at Children’s Hospital in Minneapolis. After a long series of detailed ultrasounds, we talked to a Perinatal Physician, a Neonatal Cardiologist, a Genetic Counselor and a Care Coordinator. They gave us the diagnosis of HLHS.
Our diagnosis is currently borderline so we’re hopeful. The current, worst case process for dealing with this will involve a series of 3 open heart surgeries. One immediately a few days after birth. Another around 4-6 months and another one somewhere at 18 months to 5 years. The procedures basically convert the heart from a 4-chamber organ to a 2-chamber organ.
We’re scared, unsure and sad, but also extremely happy to know about this now, before our little one is born rather than learning at birth and having to deal with all of this all at once.
We’ll share more soon but wanted to share some basics.
If you want to learn more, here’s a link to an article from the CDC with some Facts about HLHS to start you down the rabbit hole.
In short, Audrey is healthy and safe. Little baby Royer is healthy and safe while inside mom. This doesn’t affect the way we handle the pregnancy right now other than additional monitoring.