As promised, let's chat for a second about Google. I'm sure by now you've been curious enough about HLHS to want to know more. What did you do? Did you head to the library? Did you call up a pediatric cardiologist? Or did you head straight to everyone's favorite search engine? (because let's face it... Bing sucks)
If you've gotten the chance to google (I hate that this is a verb) a little about our baby's condition... you know that it's scary. When you've gotten the chance to google it as much as I have... I'm talking days of googling... you'll understand why I call google a Foe. Google has loads of information, and sometimes just a little too much. The truth is, with HLHS, no two cases look exactly the same. It's not a textbook condition with an easy fix. It's a condition with a lot of variables, that takes careful planning on the part of very skilled cardiac surgeons to palliate. Did you have to google the word palliate? Basically it means our daughter will never be "fixed" just given temporary solutions for as long as they last. Here's the limited information that we have so far. We will know more at the end of the month. Don't even get me started on the waiting game... it's worse than google.
Our daughter has Severe Aortic Stenosis (narrowing of the aorta and the aortic valve). During the first 8 or so weeks of pregnancy, her aorta simply didn't form fully or correctly. This can be genetic, though there is no history in either of our families. Because of this narrowing of the aorta, her left ventricle has to work too hard to pump blood through. The muscle, straining, has already begun to scar and show signs of hypertrophy. In the next 14 weeks or so of gestation, the muscle will continue to thicken and, as the rest of the heart grows, it will shrink -- rendering itself useless. The right ventricle (perfectly healthy!) is in charge of the lungs. The left ventricle's job is to pump blood out to the rest of the body. When a baby is born with HLHS, a series of 3 (or more) surgeries are required in order to reroute the valves to allow the right ventricle to pump blood, not only to the lungs, but also to the remainder of the body. In short, this allows a child to function with only half of a heart. It's pretty incredible. Is the solution perfect? No. Does it always work? Absolutely not. There are a number of complications involved and, like I said earlier -- no 2 cases are the same. I guess us heart parents just have to hold on to a whole lot of hope!!!
The general sequence of the 3 major open heart surgeries is:
1) Norwood - within the first week of life. This surgery holds the highest risk and the time between the Norwood and the next surgery is very critical.
2) Bi-Directional Glenn (or hemi-fontan). This surgery typically takes place between 4 and 8 months. The time in-between the Norwood and the Glenn is called interstage and is a long, scary time.
3) Fontan - The final surgery has a wider range of completion ... somewhere between about 1 and a half years old to 4 or 5... all depending on that child's case and health.
In between those surgeries -- we're certainly not home free. There are lots of echos, heart caths, and observations to look forward to. We will get to know the staff at Riley very well!
Thank you for coming here to learn more about our journey. I will continue to update you as we learn more and just ask that you keep us in your thoughts and prayers as this is never something we expected, but something that we are working hard to prepare ourselves for. We have been overwhelmed by your love. What a blessing to bring our child into the world with your support, care, kind words, and prayers.
Should you still feel the urge to learn more, skip the search engine-- here are a couple of reputable links with further information about HLHS.
Samantha I left a comment at TpT, but I wanted to come here and reach out. Both of our girls were born with complex heart disease: one with TGA plus single ventricle and the other "unspecified single ventricle". She also has dextrocardia, so it is just very complicated.
ReplyDeleteThey didn't have any surgical interventions until 35 months and 15 months respectively as they were orphaned in China. It is POSSIBLE with God for miracles to happen. Our older daughter had the hemi Fontan and Fontan done in the same surgery at 35 months old. She came home 8 days later, and is healthy and happy 5 1/2 years post-op.
Our younger daughter had the Glenn in
Shanghai at 15 months, and the Fontan here at 38 months. She too is healthy and happy, and past the one-year mark for her post-op! I hope me sharing will add to your hope!
ReplyDeleteThese special kids with special hearts are amazing and miraculous in every way!