This comment was for a post that was deleted, just posting it here so it's not lost forever.
We were late to get an appointment as it was early into the pandemic. I was barely able to be in the room for the ~18 week scan, I wasn't allowed in the 20 week scan (at 21 weeks) so my wife FaceTimed me. No one mentioned anything was wrong at that scan, just that we need better tests at UIC. My wife had more tests there, I had to wait in the car as I wasn't allowed to go with her for those tests, during that test a Dr told my wife my baby had a heart defect, but it wasn't until the following appointment that we were told our baby had Hypoplastic Left Heart syndrome. We passed the date for a termination in IN, and were fast approaching it in IL. I think we had like 5-6 days until it was too late in IL, too.
We were told it's a rough start, but do a Google search, look at Facebook groups, plenty of kids live "healthy", normal lives, after their surgeries. My mom & my wife's dad lived to be 40, I thought if I could give my child 20-40 years, it was better than 0. The oldest person with HLHS is in their 30s (as long as the surgeries have been around). We thought Sterling would be the same.
An amniocentesis ruled out the trisomies, and a few other common abnormalities. My wife and I agreed that a positive result on a genetic condition would likely sway our decision for a termination.
Some babies are born without their heart disease being discovered until after the baby is at home. Their brains are often starved of oxygen during that time, leading to other serious complications, so we were happy at least we found out and could prepare.
It wasn't until after Sterling was born though did we discover there was more to her story. She received a new diagnosis every week, until she was 3 months old, only after genetic testing was carried out on us all did we discover Sterling had a very rare genetic condition called Kabuki syndrome. It was Kabuki syndrome + isomerism + HLHS that ultimately made it impossible for her to thrive & live a "normal" life.
I've never experienced that kind of unconditional love before and until you're in that situation, you don't know how you would handle it either. We were going by the best info we had at the time.
I agree, I likely caused my daughter to suffer immensely and I have to live with that guilt for the rest of my life. There were good, happy, fun days in-between the sad/bad days. I have lasting PTSD from watching my daughter code in front of me, then watch as chest compressions break her ribs, then to turn off life support. If I knew then, what I know know, things would be different.
Ultimately, it's made me want to bring change. Parents should have all tools at their fingertips. If they're testing for the trisomies, why not test for all other known defects, too? Surely it's "cheaper" to do thorough genetic testing early, then it is for x surgeries, x days in the ICU, etc. Insurance doesn't cover it, and it's likely $10k+ out of pocket. That way, parents can make an informed decision. Same with Medicaid, if you're limiting when we can terminate, surely making life easier for us isn't too much to ask? I wasn't asking for a handout, just trying to avoid financial ruin, and do the best for my child, without killing myself in the process. 40% of parents of disabled children end up getting divorced. I found out some of those are likely due to earning too much to qualify for Medicaid as a married couple.
The love, joy, appreciation, that my little girl was able to bring out of people is truly beautiful, especially during the pandemic. She's made people enjoy the little things, appreciate their lives, their families, their health, their kids health, hug and love their kids harder, etc.
Sterling received 2.25 times the volume of blood in her body (1260ml vs 560ml). We've already put on a blood drive in her honour and hope to do an annual drive. 60 people donated total, 30 people donated for their first time, 33 litres/59 pints total, ultimately helping up to 177 people. We were interviewed by ABC7 2 weeks ago, and are going to be on a TV commercial for a Chicagoland blood drive in the new year. The pandemic has caused a blood shortage, hopefully my little girl's story resonates with people enough for them to give blood. We've created a non-profit solely aimed at helping sick children & their families.
Hopefully my little girl's life isn't in vain, and we're able to bring some good to world because of her.