Well, we saw the pediatric cardiologist today. We can add ANOTHER doctor and four week appts. to our schedule.. this was NOT good news. That's actually an understatement. I was EXPECTING good news and instead I got, and I quote, "this is probably the most serious condition". Lucky us, huh? (Actually for lots of reasons, we ARE blessed).
Baby Seth has Hypoplastic Left Heart Syndrome. I don't really understand all of it but will add a couple of links to the bottom of this email. Basically, the left side of the heart is very underdeveloped and is not able to pump the blood (to the lungs I think) (later learned that the left side of the heart pumps the oxygenated blood back to the body). This is a non-issue in-utero as there is a duct in the heart that is usually open until 24-48 hours after birth. Once that duct closes you run into real problems. We will have follow ups every 4 weeks w/the ped. cardiologist because occasionally (rarely) that duct can close in utero and those babies require emergency surgery at birth.
In most cases, baby gets hormones at birth to keep that duct open and surgery is done (the Norwood sano operation, you'll see it in one of the links) at 3-5 days of life. A second surgery is done at 6 months and then often a third surgery at 30lbs. This is a rare condition. Sacred Heart has had 6 patients with this in the last two years and of those only one (who was very small and apparently had another syndrome) hasn't survived.
We are optimistic. Still praying for a miracle of course and grateful to be in a community that is so well-equipped medically.
http://www.rch.org.au/cardiology/defects.cfmdoc_id=5096
http://www.pted.org/htms/hypoplasticleft1.php
Both of those links were provided to us by the doctor we saw this am. They pretty much cover the same info. We see the perinatologist tomorrow so we'll be able to see how baby Seth is growing. He WAS very active today which made the fetal echo a bit lengthy.. I see my ob a couple days after Christmas and we'll just keep going from here!!
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