Isabelle Gregory

Update April 2012

Isabelle is now 6 months old and enjoying good times with mummy and daddy and her big brother Isaac. She continues to be tube fed milk but is being weaned and enjoying being able to eat, especially puddings!
We are still awaiting a definite diagnosis and her biopsy tissue is sstill being tested.
Thanks to the Lily foundation we enjoyed a fantastic holiday to Centre Parcs earlier this year. It was love ly to spend time together, and make memories that we will keep forever.
 
Many Thanks
 
Jemma xxx

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From the beginning:

I had a relatively easy pregnancy until my 34 week growth scan with Isabelle - the sonographer noticed the ventricles in her brain were slightly enlarged. This led to me having an in utero MRI and an amniocentesis. My waters broke early and placenta started to fail and Isabelle was born at 35+5 weeks by emergency c-sec. She weighed 4lb 7oz. Initially she was ok, but started to get tired with her breathing and was taken to PICU to help her breathe. It was here they found that Isabelle's lactate level was high. She was transferred to Alder Hey Hospital at 4 days old. Isabelle underwent numerous investigations including an MRI at just over a week old.

The MRI showed Isabelle had significant brain damage. We were told that they were 99 % certain Isabelle has a mitochondrial disorder. The neurologist prepared us that Isabelle would not come off the ventilator. It was the hardest, saddest day of our lives, we quickly had Isabelle baptised and were able to hold her with all her wires.
 
The following day Isabelle came off the ventilator and was breathing fine for herself, and a day later transferred from intensive care to the neuro medical ward. We realised then she is going to be a little fighter. Whilst Doctors gave us conflicting information, varying prognosis, and banded around words like 'disastrous' and 'catastrophic, all we wanted to do was get our baby home. At 3 weeks old she finally came home. 

She is now 10 weeks old and we are enjoying every day with our beautiful little girl and every day we pray for one more. We don't know what the future holds for her. At this time she is doing all the normal baby things. The neurologist has told us that it will be when she is 3 or 4 months that we will see signs of her disorder. 

We are still awaiting a diagnosis from the muscle and skin biopsies that were taken 8 weeks ago.