Emily
TrachKid Profile
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Emily was born at 36 weeks after placental abruption. It wasn't a bundle of laughs: we were both in intensive care - me after they had saved my life after i bled out, em fighting for hers. No one expected her to survive - she showed no signs of life at birth (her APGARS were 0 and 1) but was revived. She suffered from hypoxic ischaemic encephalopathy and then seizures.
As the days passed and she was still with us, their predictions changed: yes, life, but you should be prepared for cerebal palsy, severe brain damage...
We got home after 2 weeks or so and went back to hospital for an MRI that we had been warned was almost certain to show brain damage. It didn't!!
What it did show was missing bits in her brain. Again, the prognosis was depressing - maybe no walking, talking, feeding...
We went home to get used to these ideas and meanwhile emily decided to stop eating, develop strange breathing, and a stridor. Eventually at 5 months she had an emergency tracheostomy and then open heart surgery + aortopexy. She was ventilated for 2-3 months because of tracheomalacia, then came home for good in September 07!!
Since then she's been doing great, aside from the growing...she's been fed orally since Februrary 08 but it's a struggle and she hasn't put on much weight all year.
Her trach should come out next spring. As for her brain - endocrine tests and eye sight testing have so far been fine. She's learning quickly, signing loads, and seems all round okay to us :-D
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- Member for
- 2 years 6 weeks
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- United Kingdom
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Topics I've Participated In
| Title | Poster | Replies | Updated |
|---|---|---|---|
| Subglottic Stenosis/Trach Reconstruction | BrooklynMikayla | 1 | 1 year 5 weeks ago |
| Baby with smelly neck after trach... | Williamsmom | 8 | 1 year 9 weeks ago |
Guestbook
to korbyn:
thanks for your message.
i have spent quite a lot of time looking into the PCC part of things but we have been so fortunate that none of the doctors' predications about development have come true so far. emily has been physically delayed but not mentally...
x to your son!
clare.
PCC......
Hello, Our son was born with complete agenesis of the corpus callosum, he was trached for 3 years, developmentally delayed by some and is tube fed, he never learned to eat. He is 10 years old now doing well in school, pretty high functioning and is sweet as can be.