Road traffic accident: Rhea-Olivia

Published: August 2015. Date of brain injury: 2013 (child aged 2 years).

After two months in a coma, Rhea-Olivia awoke having lost the ability of many basic skills such as walking and talking. She received 12 weeks of intensive rehabilitation at a specialist centre where she regained strength and improved greatly.

Every day I’m grateful that Rhea-Olivia is still with us after her accident.

It’s been a turbulent journey and she still has a long way to go. I’m hoping that one day she will walk again even if it means with support and that she will start to communicate more with words. After the crash I was told that she wouldn’t survive the night so to get to where she is now is brilliant!

Family life and carers

Our family life can only be described as mayhem. There are so many people involved in our life; strangers coming in and out of the house such a s different carers and therapists. It’s a huge change, and sometimes difficult to adjust to. Before we were so self-sufficient.

Of course, I couldn’t cope without this support. It’s a necessary intrusion as part of Rhea-Olivia's rehabilitation. We are learning to accept this as the norm now, some days are easier than others and daily activities now require a lot of forward planning.

I’ve had to stop thinking of these people as guests to our home. They are here to help, and try to make life easier for me and Rhea.

Although I do have to take them into consideration when thinking of what activities we will do that day. For instance, if a carer doesn’t wear the correct footwear, it’s not practical for us to take Rhea-Olivia out on a walk. So sometimes we may have to rearrange our plans. It’s like working for a big family firm where the main goal and product is a better quality of life for Rhea.

Seizures

Since her brain injury, Rhea has been having seizures. It’s been explained that the scarring in her brain is probably causing electrical signals to move around, making it unstable. This is probably why she has seizures.

Her mild seizures see her zoning out a little. She will stare into space and isn’t very responsive to her surroundings.

However, more recently her seizures have increased and become more severe where we have had to take her to hospital. It seems to be viral infections that brings them on; for example last December Rhea developed a cold leading to a chest infection which caused her temperature to keep rising. We tried to manage this with paracetamol and antibiotics but her body began to struggle to fight the infection.

During the night her temperature climbed to 39.8⁰C and caused Rhea to begin a tonic-clonic convulsion. Medication stopped the convulsions but it was still 48 hours before Rhea returned to her usual self.

My fear is that the more severe seizures will result in further brain damage. But hopefully the right medication will minimise this risk.

I also worry of them occurring during the night. A normal baby monitor will not detect them, and because of the posture correcting sleep system that Rhea has to use at night it is proving difficult to find a suitable epilepsy monitor, but we continue to search and research.

We’re getting tests and are waiting on results from an EEG. We understand and accept that many children with brain injury are often diagnosed with epilepsy. If Rhea-Olivia’s seizures continue, she could indeed be diagnosed but with correct medication we can control and monitor it.

A change to everyday life

When Rhea and I returned from the The Children's Trust where she had residential rehabilitation, I did have a sense of loneliness. When we were there, everyone else had some idea of what we were going through or had a similar story.

For everyone else life had resumed when we came home. My family were an amazing support and still are. But at the end of the day, they have jobs and families and things to get on with.

I’ve lost friends since Rhea’s accident. It’s not as easy to meet up with people as it’s a lot of preparation to get her ready and sort out equipment and not everything is accessible because of Rhea’s additional needs.

Equipment, schooling and communication

Because Rhea-Olivia is not walking yet there is a risk of scoliosis, which is curvature of the spine. To prevent this she wears a lycra suit for much of the day which supports her frame. These are very expensive and at first we were only provided with one. But it was a nightmare trying to keep it clean, as it would be with any child. So luckily it was finally agreed for her to be fitted for a second suit.

There is a danger, that because she isn’t walking yet, her feet won’t grow in proportion so by encouraging her to stand in her standing frame for ten minutes a day, it will minimise this risk.

A specially adapted chair at nursery means she can be on the same level as the other children. 

One benefit of Rhea-Olivia’s time at nursery is that she communicates so much more. She can say about seven words at the minute. She has to attempt to say a few words and use signs at nursery otherwise people don’t know what she wants.

The difficulty at home is that myself and other family members know what she is trying to say without much effort from her. So she has stopped using her Makaton signs with us.

Makaton is a system similar to sign language. I could be firm and insist she uses this before responding to what she wants but that is easier said than done, as Rhea then becomes very frustrated so I do tend to give in.

I’ve been told that speech can be the last thing to come back after a brain injury or major trauma. It’s one of the biggest things I miss; her ability to talk. Before the accident, Rhea-Olivia had the skills of a four-year-old. She was so advanced in talking and walking so it’s hard for that to be taken away so suddenly.

Coordination and appetite

Rhea-Olivia’s left arm has really improved. Her whole body was extremely weak after the accident but there seems to be more movement as time goes on especially with her left arm, which she now seems to have full use and control of again.

Her coordination isn’t great but it’s something we are working at. We use lots of toys that encourage coordination and development.

Her appetite is unusual now. She eats little and often and will only take very sweet foods. It’s hard to regulate her nutritional intake. Her sodium levels were very low and we struggled to get her to eat anything that would increase them. It was McDonalds fries that ended up doing the trick!

It’s important that she eats enough so we have to allow her to have sweet foods. I try to give her naturally sweet things such as bananas, grapes, sweet potatoes. And instead of biscuits, I give her cereal bars.

Things have changed so much since Rhea-Olivia’s brain injury. It’s very hard thinking back to the child she was and seeing the child she has become now but as a parent I am just thankful that she's still with us, taking each day at a time and taking pride in each triumphant step towards her recovery.