How severe will it be?
Is Ella going to be diplegic, hemiplegic, quadraplegic?
How will she cope?
How will we cope (both together and with Ella)?
What happens to her when we’re gone (not too soon hopefully!)

Some thoughts were purely selfish; we’re only human. Some thoughts were misdirected rage, looking for someone or something to blame etc., some were of despair.

As the time passes, it’s becoming easier.

I’m fine! … why am I moaning … I don’t have CP. I suppose it’s because we all want the best for our kids, and CP doesn’t fit in with that. Of course it doesn’t. But one thing resounds every time I look at the both of them:

As 26 weeker preemies, it’s a miracle they’re even here. 5 months of hell in NICU, with doctors telling you that your kids are unlikely to make it through the night is enough to put your personal angst well and truly in place!

Most of the thoughts you begin to realise are selfish ones, and it certainly starts to put other aspects of your life into perspective. It’s Ella who counts at the end of the day, and we owe it to her to do whatever we can to make her life as happy and enriched as we can.

Unfortunately, Ella was also classified as severely deaf along with her brother back in May. This made things even worse when I found out about her CP diagnosis. I will never forget the moment when I asked the following question at one of their review clinics:

“If Ella is deaf and she has CP, how will she be able to communicate?”. He simply replied, “The worst case scenario is that you’re looking at life long care in a wheelchair”.

He told it how it was, but it really was the worst case scenario, and the truth is, you just don’t know how it will pan out until they’re around 18 months+. Even then, it’s an unwritten book.

At the time, I went white, felt sick and the room consisting of my wife and 5 of the community help team went deathly silent. That’s the only way I can describe it. My wife asked another question and we moved on.

4 months on, Ella is now showing signs of recovering from her hearing loss, and she’s making great strides improving on many of the things she was unable to do. We only suspected CP when she was lagging behind Max in her developmental progression.

At the end of the day, she’s showing an overwhelming desire to overcome the problems that hinder her, and it’s this that we will help her strive to achieve.

“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!