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For any parent, finding out that your baby or child has cerebral palsy is nothing short of devastating. It’s hard to describe the emotional turmoil you begin to go through when you hear those two words confirmed for the first time. It conjours up all sorts of terrifying thoughts, and some of these I will try to convey over the coming weeks.

“Cerebral” refers to the brain and “palsy” to muscle weakness/poor control. Cerebral palsy itself is not progressive (i.e. the brain damage does not get worse). However, secondary conditions, such as muscle spasticity, can develop which may get better over time, get worse, or remain the same.

Cerebral palsy is not infectious. It is not a disease and should not be referred to as such. Although cerebral palsy is not “curable” in the accepted sense, training and therapy can help improve function. Ella and her twin brother Max were born extremely prematurely at just 26 weeks gestation (3 months early), and I intend to talk about this in more detail as time progresses. Extreme prematurity (and prematurity in general) present an increased risk of developing cerebral palsy.

Unfortunately, during Ella’s stay in the various Neonatal Intensive Care Units (NICU) that saved her life, she suffered extensive brain damage as a result of a fungal infection/haemorrhaging (the subject of much debate between the hospitals that looked after her!).

Miraculously, and beyond all initial expectations, our little soldiers, Max and Ella, came home to us in March 2006.

So to kick this off, it’s now 4 months since Ella was diagnosed as showing early signs of cerebral palsy (CP).

As with all things web, it’s very easy to get bogged down by information overload. I know, I’ve been there several times! I’m hoping this blog will help to provide a central resource for other parents wanting to know more about CP, and I hope to share our personal experiences with Ella as an ongoing journal.

Please feel free to email and ask questions!

Category: General Ramblings

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  1. Anonymous says:

    I am interested in Ella and was wondering how she could get a fungal infection in nicu, i can’t imaging how this would lead to a brain injury. Is there a name for the infection? Did it result in lack of oxygen ?

  2. Steve says:

    Thank you for your comment.

    The infection was the subject of a contentious debate between the hospitals that cared for her. One felt the brain lesions were consistent with haemorrhage, whilst the other felt it was possibly fungal in origin. At the time, Ella had some spots on her skin which were scraped and cultured to reveal Aspergillus growth. Aspergillus is rare, but at the time it was better to act quickly, and so treatment with Amphotericin B commenced for 6 weeks. The lesions (whether Aspergillomas or bleeds) cleared and didn’t progress any further, but the end result was the same in either case – cerebral palsy.

    If it was infection, the source could have been a cervical cerclage (suture operation) that my wife had 2 weeks prior to birth (especially given that Ella was head down in the pelvis). That, coupled with the fact that fungus is slow growing, it almost definitely would have been in utero exposure (inside the uterus) to have seen the lesions when we did.

    If it was a bleed, I don’t believe it happened in utero because the original ultrasound of Ella’s brain was normal 3 days after birth. If it was a bleed, then it was made worse when her kidneys failed and she became so oedematous that her blood pressure became uncontrollable. This may account for the numerous lesions she developed on her brain.

    However, the lesions didn’t result in a lack of oxygen, they resulted in the damage/destruction of the affected parts of the brain. In Ella’s case (if I can remember correctly), there was one on the periventricular anterior lobe, head of caudate nucleus, basal ganglia and cerebellum (there were about 7 in the end).

    Hope that helps.

  3. gillian says:

    Hi steve, just been searching the internet to talk to other people in my situation. I have a 3 year old son called Kai. He has spastic quandraplegic Hypotonic CP. Affected in all 4 limbs. Been a rollercoast of evens since he came into our world. To be honest am really struggling at the moment to deal with his disability.

    He eats orally but has started to go mad when sitting in his squiggle chair, so now is back on our laps!!! Far too big for that and killing our backs but cant get him in the chair. he also screams alot of eating!! Going into hospital on Monday for tests on reflux, he is meds for it but i didnt think it could all of a sudden get worse!!!

    I struggle to cope with our lives. He has to have all his food mashed up, so cant just go out for the day without planning it all. Also kicks off at every meal so not good in public!! (still not use to people starring)
    Kai is unable to sit unaided, can not talk or walk. He does have a standing frame but seems to go to one side and stay there!!!

    I have so many friends with children the same age as kai, so that still breaks my heart seeing them. I have not met anyone in my situation so no one I am close to knows the loneness i feel daily.

    Have you met anyone in your situation, there seems to be nothing in my area to help us as a family!!!

    Hope the twins are doing well.

  4. Allie says:

    Wow Gillian, that sounds so hard. I wish there was some way to get your email, just to talk to you. I’m not a parent, so I don’t know what you’re going through personally, but I would love to just be able to talk to you.

    You will be in my thoughts and prayers, for sure.

  5. Laura says:

    Gillian, my daughter has CP, Eats orally and what you are describing is exactly the same as what im going through with my little girl. She is 18 months. would love to chat x

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