Your nieces situation is different than mine. But, I wish the outcome to be the same. As Chloe is doing very well. I do understand how your brother and SIL feel. It's devastating, not what you expect and its very hard to come to terms with.
I don't know what you've read about my story. But, Chloe was born on April 25, 2011. I had an uncomplicated pregnancy until 34 weeks when I developed high blood pressure. I had NST every other day and went in for an induction on Easter. I was 39w2d.
She was born with pierre robin sequence. Small lower jaw, cleft palate, tongue in the back of her throat. And she was small for gestational age. Weighed 6lbs 3 oz, 21 in. long.
We had no idea Chloe was special until the pediatrian looked at her. Chloe breathed fine but couldn't be fed with a bottle. I delivered in a hospital without a NICU and she was flighted out. I was devastated, my first baby and just hours after birth, I had to wave good bye as she left me in a isolete. It was to soon for us to be parted. I cried and cried and slept hardly at all. People kept showing up at the hospital to see Chloe, and she wasn't there. I sent DH to be with her, and that made me feel better. The nurses tried to cheer me up. But, I thought my world had ended. It felt that bad.
My OB let me out the next day, and I went straight to the NICU. She was in an isolete on a feeding tube in her nose. And wires everywhere. I'd never seen a baby like that. So, it was very alarming. I held her and rocked her non stop. Never wanted to leave. But, we stayed at the hospital. Dh had taken off 3 weeks for her birth. So, they ran countless tests and asked non stop questions. They mentioned Sticklers Syndrome and a really bad one. They checked her heart. We met with craniofacial, genetics... You name it.
And we worked with them much of the first year. They haven't found any genetic links or hereditary. So, it looks just like freak of nature. Our odds of another child with PRS is increased 3-5%. So, thats the least of our worries.
We learned how to feed her with Mead Johnson Cleft palate nurser. But, they sent her home sleeping on her back 5 days later. We were so pleased. We scheduled lots of follow ups. Etc. And had weekly weight checks.
In June we went to the Craniofacial follow up. Where I showed the surgeon her recessive breathing. Her tongue was blocking off her airway. We are so lucky she never stopped breathing, those nights we put her to sleep on her back. Now I know that you never put a PRS baby to bed on the back. The risk is higher than those of SIDS. We were informed that she needed Jaw distraction surgery. It was awful, I thought she was doing so well. And here she was failing to thrive. So, just days later she had major surgery. She was intubated for 5 days in the PICU. It was so scary seeing her like that. They had a hard time getting the breathing tube in so, it had to be removed in the operating room. It happened to be my birthday. I was so scared. But, it all went fine, and she returned home 2 days later. She put on weight really fast, then. And for the first time ever my daughter had no trouble breathing.
We turned the pins behind her ears every day. And the distractors were finally out in Septemeber. She also had ear tubes placed. Because with a cleft palate, fluid gets trapped in the middle ear. We were told it was outpatient, but Chloe was in so much pain. They kept her overnight to monitor her while on morphine.
Then 3 weeks ago, she had her cleft palate repair. That was a lot easier than the jaw distraction. They told us it was a 3-5 day hospital stay, but they sent her home the next day. She was on liquid diet for 1 week, then 2 weeks later (today) resumed all normal feeding. I bottle broke her at 9 months with the avent magic cup. And she now feeds herself.
She meets with Occupational therapist, and speech therapist once a month. The first 6 months of her life was the hardest. And now that we are approaching her first year, it has gotten so much easier.
Developmentally she is on target or advanced. Speech is normal, physically ahead, and mentally advanced. They say I'm having the terrible 2s early! She climbs stairs, gets off furniture, says num-num and Ma Ma, feeds herself, takes off her pants and diaper. She unzips pockets and gets what she wants. She goes for something, you move her, she acts like she's interested, you turn your head and she goes right back after it!
