I'm new to the Forum and finding it a fantastic resource so far. I've given my story in the introduction area, but I thought I would give a bit more detail about our NICU experience here.
My daughter Sophie was four days overdue in November 2008 when I realised she had stopped moving. I went to the hospital for a checkup, and within an hour found myself in the operating theatre under general anaesthetic having an emergency c-section. She was born not breathing and with no heartbeat and had apparently tangled the umbilical cord around her legs six times, thus cutting off her oxygen.
She was transferred from Albany, WA to Perth's Princess Margaret Hospital NICU by Royal Flying Doctors Service. She was diagnosed with Hypoxic Ischemic Encephalopathy (Grade II-III), which is a form of severe brain damage caused by the lack of oxygen during delivery. As a result of the injury, she also started having seizures at 12 hours old. She was also diagnosed with the highest grade of Meconium Aspiration Syndrome.
Sophie spent three days receiving cooling treatment for her brain injury, in which her whole body was chilled to 34 degrees C. I was flown up to Perth by RFDS the day after her birth, and the first time I ever got to touch her she was shivering and whimpering in an induced coma. It was one of the most heartbreaking moments of my whole life. I didn't get to hold her until she was four days old.
She started to wake up at that time, and within a couple of days was lucid enough and doing well enough to try some food- first via NG tube, then via bottle, and finally by breast. By the time she was a week old, she had ditched the feeding tube and was doing a combination of bottle and breast. She did really well in the NICU, but still required oxygen for 26 days due to the meconium aspiration (she got a really bad dose- didn't have anything left to poop for about a fortnight after she was born!). We were feeling very optimistic, but when she was about a week old, our neonatologist called us into his office and told us that her MRI and EEG scans had come back showing severe brain damage and abnormal activity. In his opinion it was likely she would suffer a range of disabilities including cerebral palsy and global developmental delays.
We were in complete shock- she was looking so healthy, and we had no idea what her brain injury really meant.
Well, when we were released, we searched and searched for information, hunted down every therapy we could, and were absolutely determined to prove the prognosis wrong. And today at 14 months of age, we've succeeded. Sophie is walking, talking, up to date or ahead in every developmental area, and an absolute delight.
I could go on and on, but I've probably done so enough already. I know how hard it is to find information about HIE, so I started writing a blog about our experiences when Sophie was about 6 weeks of age, and it's become a great chronicle of our journey. If anyone else is looking for information about HIE, stop by and take a look- hopefully you'll find a lot of helpful resources. Sophie's Journey is here.
She wasn't premmie, though- she was four days overdue, and a comparatively whopping 3.575kg! They couldn't find clothes to fit her in the NICU. Lol. I agree, though- premmie babies have so much more to overcome, and they are just amazing.
Don't know if anyone else saw the girl on American Idol tonight who was born at 32 weeks, weighing only 2lb, and is now 16 years old, gorgeous, and has a spectacular singing voice to boot? Brought a tear to my eye
Sorry Claire - I always associate babies in NICU as being prem, (as my daughter was quite prem), sorry, force of habit .
What I mean to say that it is totally inspiring to see kids born with difficulties, who go through such a hard time to get well in NICU type places, end up blossoming and beating the odds the medical profession sometimes give them. That extends to all kids / babies, not just the premmies.
welcome and thank you for sharing your daughters journey. what a scary start for you all.
I'm so happy to read how well she is doing now and defying what the medical professionals told you!
My son was born @ 33 weeks but in his first 48hrs he had a seizure. The cause what thought to have been either a grade II hamhorhage in his left brain ventricle or HIE.
we were told at that stage they did not know if he may have caused anything (they beleived it had not though and he never had another seizure) and it was a matterof time to see if he reached milsetones etc, which he did.
He turns 4 in April, he is a beautiful boy, he is actually having a big assessment tomorrow (which goes for 4-5hrs) to diagnose if he has Autsim or PDD (Pervasive Developmental Disorder)
he is speech delayed and has a sensory processing disorder but he is going to speech & OT at the moment and both are making a big difference in his life!
I hope your daughter continues to proove her strength and fighting spirit!
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Sophie's HIE journey
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I hope she continues to do well!
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