10 Sep 2011 – Update on Isabella
Isabella is now six and a half months old and well what a busy time we have had. She has had 6 hospital admissions for Whooping cough, Seizures and viral infections. Her seizures were our of control but with the help of numerous anti seizure drugs they have been reduced, unfortunately seizures are part of daily life now. Isabella is also exclusively tubefed as we found out it was too dangerous to orally feed her. She has an NG tube but will eventually get a tube directly into her stomach. She is blind but we do notice that Isabella knows light and dark. Despite all that she has been through Isabella is a true joy in our lives. She has a lot of love around her especially from her older brother Alex who adores her. We are also lucky to have fabulous family and friends and have been contacted by fantastic Aicardi parents all over the world.
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Our daughter was born on the 23rd February 2011 in Dublin, Ireland.
Pregnancy was normal and nothing untoward happened during the delivery (easy for the husband to say). During the birth the umbilical cord wrapped around Isabella's neck which is not an uncommon event however it did mean that the nurses placed her in the special care unit in case she had swallowed any meconium.
We where told this was merely a precaution and not to worry and everything seemed fine until the next evening when my wife was summoned to the special care unit to be told that they had performed an ultrasound on Isabella and had found hydrocephalus (fluid on the brain).
Obviously we where besides ourselves with worry and although they kept Isabella in the special care unit for the night we where told she would be transferred to the children's hospital the next day.
This became urgent when Isabella suffered three seizures during the night. Once Isabella was transferred to the children's hospital they performed CT and MRI scans.
She was first diagnosed with schizencephaly and subsequently aicardi syndrome.
We have been told to expect moderate to severe developmental issues and it seems certain she will also have blindness to contend with.
The neurosurgeon will be making a decision in the next couple of weeks as to whether surgery will be required to remove the fluid which will depend on Isabella's head growth.
Suffice to say it has been a very difficult week for my wife and I and we probably still haven't fully come to terms with it.
On a more positive note Isabella is now at home and is surrounded by loving family including her brother. She has not experienced anymore seizures since that first night and her first physiotherapy session went well.
With only being just over a week old it is impossible to gauge developmental issues but I'll update this page as often as possible.
We would be very interested to hear from other parents, especially anyone in Ireland or the United Kingdom.