trigger warning: childhood illness

Not related to my current baby in utero, but some people in the group were curious about my first Borns story, so I typed it out for y'all :) LONG POST

She was born w/out complications, "healthy" at 39 weeks. She had no abnormal scans or anything and my pregnancy was healthy and uneventful. When she was born everything checked out and she was discharged. But over the first 6 weeks, she was not gaining weight no matter how much I fed her, and yes she would eat. She was very cry/whine though, like constantly, she was probably hurting but nobody knew at this point. So at her 8 week follow up after I tried everything the Pedi said to do ( this sucks because I felt like he was so judgemental of me being a you g 21 yr old mom and like he wanted to call cps or something:( ) he had her admitted to the local hospital. They ran tests and found elevated bilirubin, and said they couldn't do the further tested and transfered us by ambulance ( an hour) to U of M ( Michigans best children's hospital ,in my opinion) so there she gets diagnosed either that same day or next , with biliary atresia. ( A non genetic form of liver failure due to the bile ducts not growing the right way and bile can't flow from the liver) now this is not genetic, it's not something I could have caused, it's a random fluke and it's super rare like 1 in 100,000 live births. I was told ultimately she'd need a liver transplant, but to try and ward it off until she could get on the list they could do a procedure to try and reroute called a Kasai.

Over the first year of her life she was in and out of the hospital, she has a feeding tube, and over time fluid kept building in her belly making it super distended, she also turned more and more yellow in front of me and there was nothing I could do but wait. Despite all this she was still always smiling and playing through it.

1-2 months before her transplant, she took the ultimate worse turn they warned me could/would come but I still wasn't ready. She got REAL sick REAL fast and was admitted to U of M for an extended stay until/if she got her transplant. I didn't get to kiss her or anything when we got to the ER I didn't know but they did know what was going on and immediately put her into a medical coma. She declined over the weeks, on SO many machines including dialysis and a vent. I was prepped by social work for her possible death and what I wanted to do with her body, I was told that she has days/ hours left and even if she did get a transplant ( she had one fall through before this talk) she would probably not survive, and if she did, they didn't have faith she'd make it through recovery or live a life without massive delay from the hospitalization long term. I was so heartbroken I held it in, but I prayed and prayed every night with all I had ( I know not everyone believes in god, I didn't for a while but this is what made me believe again personally) and then literally hours before they wanted to pull her a call came through, about a 10 year old boy in Ohio that didn't make it, his mom was donating his organs ( rest in peace Simon thank you so much ❤️) the liver matched my daughter, they were prepping her and it and flying it in on the jet, OR scheduled for 1am. Now we had been through this before, it fell through, so me and my family ( her bio dad is not around, is a pos but now she has my husband) we're on edge until it arrived and got cleared, she went in for surgery at 1:30 am, 10 hour surgery, went well. Doctors instantly were baffled by how well the liver started to take mid surgery and that she was already losing yellow color. She actually started to instantly improve. Doc was cool and explained everything after and even took pics of the bad liver and showed me how and where it was bad ect. Another cool thing about her surgeon is he flew in on his vacation from Florida, just to do her surgery. talk about dedication.

Anyway despite her terrible odds, she DID survive, made a AMAZING recovery with minimal complications. She discharged before they expected ( she left at 2 month vs 3-4) and had ZERO development delays and is now a healthy thriving 7 year old who's post surgery check ups and following has been great! She has only needed a few minimal thing like a stent. to help open open a portal vein ( sooooo many veins in the liver) her live expectancy can be up to 50 years post transplant and so far she has looked very good. I'm just so happy she's still here with us.

Thank you for hearing her story :)

My two points:

Biliary atresia awareness

Please consider organ donation

❤️❤️

TLDR: daughter was born with liver disease not detectable in utero or immediately after birth, very rare, required liver transplant but has done very well!