What it really like to be… a parent to a child with cerebral palsy

Whole family

Giving birth to a healthy child is something so many of us take for granted. So what is life like when you give birth to a child with cerebral palsy? Introducing Angela Boreham, a mum of three, whose first child, Leona, was diagnosed with severe cerebral palsy at the age of three months.

During Leona’s birth, medical negligence resulted in foetal distress and oxygen starvation. As a result of the cerebral palsy diagnosis, Angela went to a solicitor, took the NHS trust responsible for Leona’s care to court, and won. The damages awarded to Leona and her family has meant they were able to buy a house and adapt it to the needs of their daughter, whilst keeping life as normal as possible for Angela’s two younger sons. Leona is now 15 years old and has outlived her original life expectancy.  In this edition of What is it really like…I talk to Angela to find out what it is really like to be a parent to a child with cerebral palsy.

child with cerebral palsy

What was going through your mind during diagnosis and thereafter?

My husband Stephen and I had never had any dealing with special needs. They didn’t diagnose her until she was about three months old. They just kept saying they didn’t know how it was all going to pan out, but by that point, we had an idea anyway. Especially, as she couldn’t swallow right from the beginning; she has been tube fed all her life.

We just went in blind, basically, and just learnt as we went along. As far as what was going through my mind – ignorance is bliss really. We just took Leona as she was. Stephen, my husband, at first wasn’t sure whether he could handle it. While I just got on with it, like you do basically. In the end, Stephen was very good with her. She was a very irritable baby, she wouldn’t stop crying for 23 hours a day. I don’t know how I did it!

This must have been an incredibly emotional exhausting period for you – what kept you going through that time?

Leona did. I just went on auto-pilot. It was emotional, but, I think if it happened now, knowing what I know now, I would have been more in pieces. I mean, she was a baby and a baby doesn’t do a lot anyway. We learnt early on that Leona was going to do what she was going to do and that was it. When I look back at the photographs I looked terrible. I think I couldn’t do it again. Up until she was ten months old she never stopped crying, not until they got her medicines right. To be honest I don’t think I was thinking too deeply about what was going through my mind.

What does having a child with cerebral palsy mean for Leona’s identity and your family’s identity?

As a family, we can’t just go and do normal things. We attempt to keep it as normal as possible, especially for the boys. I try not to let Leona’s condition affect the boys in everyday life.

How hard is it having a child with cerebral palsy on a day-to-day basis and how has it affected your life overall?

Day-to-day, everything has got to be planned. Leona’s got medicines and, if we go out for the day, she needs rest. So, we have to plan little breaks and get her out of her chair for a while., As you can image, it’s not comfortable to be sitting in a chair for hours and hours.

If we go anywhere, Leona has got to be thought of and there are certain things we can’t do, like swimming and things like that. We also have to think about if where we are going is wheelchair accessible and then you have to think about all the timings. Now she has got bigger, there is the changing aspect. There is usually nowhere to change disabled people when you are out. Because we have to plan so much, it does restrict what we can do as a family.

We do go on holiday as a family, however, I don’t know how it will work now that we are leaving the EU. It is hard to have a holiday out of Europe. We are one of the few families that do take their disabled child abroad. It takes a lot of planning. You can’t just go for cheap deals, I have to really plan it and book it a year in advance. The cost is huge as you have to pay for oxygen whilst on the flight and we have to have oxygen while we are away. Leona is gastronomy fed and if we go away for two weeks, I have to take two weeks’ worth of feed for her. They come pre-made up in bottles.I have to ensure all her feeding equipment, all her overnight machines are packed too. It takes about two weeks. I don’t know why I do it really. When I talk about it. I need a holiday by the time I’ve done it!

What do you think the future holds for your family now? How is this different to what you had envisioned?

Leona has now outlived her life expectancy; they didn’t expect her to reach adulthood. When the case against the NHS was going through, the experts gave her a life expectancy of 11. We take the future as it comes; we don’t really know what it holds. We just live for every day and do what we can.

When we contacted our solicitors, Forbes, they helped us secure a better future for Leona and for us. It meant we could get the house that we needed and Leona has everything she needs. The money helps us go on holiday as a family or otherwise, we would never have been able to do it – the costs would have been too high. The money also helps pay for a carer to come with us so that Stephen and I get a holiday too. It makes life a lot easier.

What advice would you give to other parents who find themselves coming to terms with cerebral palsy resulting from negligence?

I would contact a solicitor you can trust; you have nothing to lose. They will help you get medical evidence from the hospital. Forbes did everything for us; we didn’t have to do anything really. Don’t get me wrong, there were stressful bits, but it was pretty much straight forward. Also, what helped the most is that they came to see us; as you can imagine, it would be difficult to visit your solicitor with a disabled child in tow.

I was also supported by my very straight talking GP. As there was nothing wrong during my pregnancy, my GP wanted answers and advised me to go and see a solicitor, even though I was already on that path before I went to see her.

Forbes Solicitors have been raising awareness on how clinical negligence can lead to brain injuries with #LeonasStory. If you want to find out more about the #LeonasStory campaign click here. For guidance and assistance for parents of a child with Cerebral Palsy visit cerebralpalsyguidance.com

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