Scarlett was born 9/28/11 at 35.4 weeks. She weighed 4lb 8oz, I was induced due to pre-eclampsia. I had gag ultrasounds fine during my pregnancy but there was nothing abnormal, I had turned down the amniocentesis because of the miscarriage risk.
She breathed for an hour after birth and had to be intubated because she had an episode where her sats dropped down to the 30’s and her breathing was extremely hoarse.
She was in the NICU for a month, where we learned quite a few things:
1. My daughter had mosaic trisomy 13
2. She had a narrow airway caused by cysts and lower airway compression
3. None of her organs seemed to be affected.
4. Her brain was smoother than normal
5. She had a tethered spinal cord
We were told our daughter must likely wouldn’t live to be a year old. She came home after a month in an apnea monitor and we were asked to sign a DNR which we didn’t and given a letter to give the police when she died.
Scarlett had a tracheostomy placed after getting a scope and the doctor not being comfortable taking it out. Her throat would have swollen shut.
She also had a g-tube placed after failure to thrive and not passing a swallow study due to a cleft larynx which was related sometime later.
Her tethered cord was released November ’13 which she recovered very well from.
Today Scarlett can eat completely orally, cruise, play, and is only very slightly developmentally delayed. She can’t talk due to the trach but she is learning sign language and is very expressive. She recently got a passy valve so we hope to hear words soon. She has mild hearing loss and wears hearing aids. Overall she is pretty healthy, she is rarely sick. And weighs a happy 28lbs at 38in tall.