Today I met Charlie, a primary school teacher from Gloucestershire. She and her husband are teachers; they have two boys, Tommy who is five and Freddie who is two and a half. Freddie has cerebral palsy, kidney disease and epilepsy and is experiencing some developmental speech delay.
Charlie, tell me about Freddie.
I had a normal pregnancy with Freddie but at 38 weeks I noticed a decrease in his movement which led to a hospital admission and emergency caesarean section.
Freddie was given cooling therapy for 3 days as a treatment for the oxygen deprivation he had suffered. He had kidney failure and brain damage and doctors did not anticipate he would survive. He spent 2 weeks in a coma and then, after a month, we were able to bring him home. The prognosis was that he would have severe disabilities, including cerebral palsy and learning disabilities.
How was the information about Freddie’s prognosis shared and how did you deal with it?
There was a mixture of ways. In the very early days the consultants spoke very sensitively in the discussions about life support and quality of life. Some of the medical terms used were not sensitive. I understand doctors have to provide you with the worst case scenario but terminology is stark, and can also be hard to understand. Seeing the prediction of severe learning difficulties written down in black and white was very difficult.
In the first month whilst Freddie was in hospital adrenaline kept me going. When we came home and were surrounded by normality and family and friend’s healthy babies I experienced a breakdown. I was provided with excellent support from the perinatal care team at this time.
What other help and support have you had since?
From the start Freddie was a floppy baby because he was hypertonic. NHS physiotherapy was started at 4 weeks old and has been monthly since. When Freddie was around 12 months old we decided he would benefit from more input and accessed private physiotherapy and hippotherapy which has been wonderful for him.
There has been less input from other areas, like occupational therapy. The referral to them took 6 months and he was discharged after review. He does need support with his fine motor skills and so I have found support myself and used skills from my experience teaching to help him in this area.
He had a speech and language referral at 2 years old, was assessed 3 months later and had a follow up a further 3 months on from that. I thought this was too infrequent and wanted more input. SaLT were also involved in the first weeks of Freddie’s life to support establishing feeding but his feeding difficulties were more related to his kidneys and he was breastfeeding successfully on discharge from hospital so we have not had any feeding related involvement since. He has low tone in his mouth and a weaker chew, also we were aware of his risk of aspiration, so weaning was a slower process than in might otherwise have been.
What has been the most helpful support you have received?
Hippotherapy has been a really positive experience for Freddie, he loves horses. It has had a big impact on his core strength and sitting ability and I am sure it has helped him learn to walk. We accessed this through our private physio who also does hippotherapy. There are other private physiotherapists who do it or you can go with Riding for the Disabled, though they do have long waiting lists.
Portage has also been very useful, providing assistance for parents who need to help their children to learn.
How have you managed to stay positive through the challenges you have faced?
My support network. My parents live close by and I have good friends who have been present throughout. This was difficult at times because they have children the same age as Freddie. I take antidepressants which have helped me, though there have still been some crisis points, for example when Freddie received his epilepsy diagnosis.
I find it helps having structure. I stopped work to care for Freddie, when he was 18 months old we decided it would be best, and I view caring for him, providing his therapy, as my job. I attend lots of groups with him. They are for neurotypical children but I adapt to meet Freddie’s needs.
How has this impacted your eldest child, Tommy? And how has he dealt with it?
Tommy was two and a half when Freddie was born. The hardest day was when Tommy came to hospital to meet Freddie. We didn’t think Freddie was going to survive at that point. Tommy gave Freddie his middle name, Ben, which he is very proud of. Being a big brother to Freddie has made Tommy very kind and compassionate. He understands that I am sad sometimes because of what has happened. Sometimes we feel guilty for the time Tommy has to spend in therapy with Freddie and we do try to compensate for this and make sure he has lots of special time too.
What would your advice to other parents be, based on your experience?
That it will get better. You will be proud of your child’s progress, however small steps they make and however long it takes because of how hard they have to work for it. That brings a lot of joy.
You will get the basic support from the NHS but there is so much more out there. It is not always easy to find but there are amazing things on the internet available to help you help your child. I have put ideas that I have found helpful together on and Instagram account I set up for the purpose of sharing with others, you can find me @crafty_cow_therapy