Molly, our beautiful daughter was born with Trisomy 18 which is a rare random occurence where a baby's brain didn't develop and doesn't tell it to breathe so they just stop breathing. It can also be accompanied by other problems. We weren't at all aware of this. We had a test done while I was pregnant that tested for a few different things that could go wrong. it came back positive for trisomy 18, but it has a high false positive rate, when we went in to the ultrasound technician he could find nothing wrong. With trisomy 18 babies most always have a physical feature that makes it obvious such as a cleft lip or something. She had none of that so trisomy 18 was dismissed. we could have had a amniosynthesis but there is risk that we could miscarry and we were advised by both the ultrasound guy and our doctor we didn't need to do this. (they both had only seen two cases of trisomy 18 in their career and both were fairly middle aged) so we agreed.
I went in during a break at work because I hadn't felt her move in a bit and they found that when i had the braxton hicks contractions she was not getting enough oxygen so they thought if she wasn't doing well with the fake contractions, she wasn't going to make it through labor. So, they did an emergency c-section April 10th. I wasn't due until April 26th. She came out 3Ibs 13oz. She was not breathing correctly so they immediately sent her to the NICU. They did a test that tested for trisomy 18 because they felt she had some physical features that could be signs (small finger nails, low ears). The test takes 3 days to process on a normal occasion, since it was a saturday, and the lab was not open we had to wait until monday for the test to even start the process. on the 14th, it came back positive for trisomy 18. Up until that point, everything was looking hopeful. they could hardly find anything wrong with her. She had a distended bladder (where it basically was backed up into her kidneys) but they were able to maintain that with medicine. She had her kidneys, brain, heart, and liver tested and all came back normal (as with most trisomy 18 babies the organs are very rarely formed without problem) , She had a small hole in her heart, which we were told can go unnoticed and some kids can live with it, and a small hemmorage in her brain that was very mild and we were told it wasn't much to worry about. She was on a ventilator the whole time up until the 14th. it was that day we had to decide to take her off the vent or leave her on. We were told that she would probably not make much progress on the vent and that she was probably going to die if we took her off. We were stuck between a rock and a hard place. The doctors pretty much told us we had to take her off the vent n hope for the best. We decided to let God do with the situation as He wished and trusted He was going to do what was best for her. We did that because we had no other options that we were told of, really. She passed away 2 hours after we took her off. That was by far the hardest day of my life, yet I was strangely at peace knowing God had her in his arms. she was able to run and play and smile, instead of being here with pain. I obviously wish above anything I could hold her right now, change her dirty diapers, be woken up in the middle of the night by her cries, but I can't. God took her home. We like to think she had a wonderful life: she got to sleep all day, had people google eyed over her, surrounded by love, felt by love and definitely showed love.
There was something strange about her, she just screamed I love you. I know a lot of parents say that about their kids, but I can honestly say she warmed you with the love she gave off. I like to think about how proud I am of her, she came, she did what she needed to do, taught us to love in a different way, and touched SO many people. There are 80 year olds that don't do as much with their life as she did in the 4 days she was hear. I am proud to call her my daughter. Some days are hard, some are proud, but all in all while the situation stinks I overall am thankful she is with someone who could do a better job taking care of her than we ultimately could. I feel if I have learned anything from this situation, its that as a mother you have to do whats best for your child, even if it hurts you. I am sure that what we did was the best for her and rejoicing in that.
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