We've pretty well established at this point that I like to research and plan. These are the things that calm me when I'm freaked out. Plus, I'd rather learn this stuff while I have the time and energy to process it, rather than when I am recovering physically and emotionally from birth, let alone the wringer of open-heart surgery on my child. So, it should come as no surprise that I've spent a lot of time this last week researching Jellybean's condition. Obviously, any of the information I've found is subject to change based on Jellybean's specific situation, official diagnosis, and the protocols of CHM, but it's helpful to have some sense of the breadth of the challenge we're facing. That said, here's what I've found so far.
The CDC reports that, each year, only 960 babies in the US are born with hypoplastic left heart syndrome (HLHS), or 1 in 4,344. According to Boston Children's Hospital, HLHS "is one of the most challenging congenital heart defects to care for." Everything I have found certainly supports this statement.
The first surgery--the one done at 7-10 days of life--lasts approximately 6 hours. After it's completed, they wait several days before closing the chest to prevent the compression of the heart by the rib cage until the heart has had a chance to adjust to the new circulation. After surgery, kids remain in the hospital about a month. The good news is that the success rate of this surgery is high, with 90% or more of the kids making it home. However, of those that make it home, another 10-15% are lost before the second surgery.
The care at home between the two surgeries looks pretty intense. In addition to the weekly check-ups with the cardiologist, and likely lots of meds, Jellybean will probably be on oxygen and an apnea monitor. Weight must be checked daily to make sure he's eating enough, and a pulse-ox monitor has to be used twice a day to check his oxygen saturation. He may be on a feeding tube, depending on whether he's strong enough to feed himself; the low oxygenination caused by the mixed blood flowing through the body can make children suffering from HLHS too tired to feed well, so they often need supplements to make sure they get more calories per swallow. Sometimes, because they had an intubation tube in so early, they associate having something in their mouth with that sensation, resulting in difficulty taking a bottle or breastfeeding.
Although I've found descriptions of the second and third surgeries, I haven't found much on recovery or mortality stats or care afterwards. But, quite honestly, that's about a year away, and based on what I've already learned, I will have so much on my plate between now and then, I'm not sure I need to know more just yet. The goal, for now, is to be ready, rested, and as prepared as possible for whenever Jellybean arrives, because once that happens, the roller coaster is gonna take a sudden, turn down a high, steep curve that will take my breath away, and I don't want to fall out.
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