Cooper’s Journey with Cerebral Palsy
January’s Story of the Month goes to, Kerrie Keen, 37 years old who talks about her son’s journey with cerebral palsy. Kerrie is married to her husband, Owen and is a proud mum to her 15 year old son and 4 year old identical twin boys, Cooper and Lucas. If you would like to catch up with our previous Story of the Month, please click here.
Owen and I discovered we were expecting twins in November 2012 at our first scan. Once we got our heads around the practicalities, we loved the thought of our twins always having each other, always having a play mate and sharing an incredible bond for life.
April 2013, Cooper was born along with his twin brother Lucas. Cooper was the first born and weighed a little 4lbs 14oz and Lucas was born two minutes later weighing a big 7lbs 9oz. However, 5 hours after birth, Cooper was unusually sleepy and not feeding. After a pin prick blood test showed he had low blood sugar, he was taken to neonatal for the night.
The seizures began
Cooper began to have seizures and had dangerously low oxygen levels on the first night. He was then moved to intensive care and put on machines and a tube was put into his nose to enable feeding. At 6 days old he was transferred to Glasgow Children’s Hospital for a MRI. After the scan, a neurologist told us that Cooper had suffered grade 4 bleeding on the brain and would be severely disabled, if he survived.
After transferring back to hospital, where the boys were born, Cooper began to fight back. His oxygen levels become steady and he stopped having seizures. However, the paediatric consultant told us they suspect Cooper has hydrocephalus. We had never heard of this! He told us Cooper might possibly need a shunt at some point. We had never heard of a shunt but we decided to take each day as it came and see if we encounter this in the future.
At 5 weeks old, Cooper left hospital. He was finally well enough to come home. He was still being tube fed every 3 hours, day and night, which I found so difficult. The tiredness on top of trying to come to terms with Cooper being ill was such a trying time for us as a family.
Having a VP shunt fitted
November 2013, only 7 months old, Cooper was admitted to hospital in Glasgow to undergo his first brain surgery to fit a VP shunt. The aim of the shunt was to drain cerebral spinal fluid (CSF) from his brain down to his abdominal area where it would be absorbed. It was amazing to see the changes in Cooper only hours after this operation. A baby, who tightly clenched his right arm across his body, was now open handed trying to grab his milk bottle. This was an amazing day for us all. It was like we could start to see progress – a light at the end of a very dark tunnel. Cooper’s stability carried on and he became stronger and bigger over the next few months.
June 2014, Cooper had another routine paediatrician appointment. The aim of this was to keep track of his development and physiotherapy which would help make him stronger. There was nothing unusual about this appointment, I gave an up to date account of what Cooper could do and what I felt he was struggling to do milestone wise. However, two weeks later, I received the summary letter of this appointment and my heart was broken. These letters always start the same, in bullet points, with the conditions which your child suffers.
Coming to terms with a diagnosis of cerebral palsy
I knew about Cooper’s grade 4 bleeds on the brain and I knew about his hydrocephalus and VP shunt. What I didn’t know was that Cooper had been diagnosed with cerebral palsy. This was mentioned months before by another paediatrician as a possibility for the future, but it wasn’t mentioned at all during the latest development appointment. I will always remember how I felt reading for the first time that my 1 year old son had cerebral palsy. I was distraught. Everything seems to hit you that bit harder when it’s on paper after re-reading the letter. I contacted the hospital and said I desperately needed to speak to this paediatrician. He apologised and said I should never have found out that way.
Such a major diagnosis which will last my son a lifetime, this shock is something that will stay with me forever. Cooper’s cerebral palsy has since been defined as quadriplegic cerebral palsy with dystonia. He is a little boy who struggles with increasingly tight muscular spasms, mainly in his legs but in his arms too.
We can’t take things for granted
Since, he has mastered being able to roll both ways which is fantastic! He’s unable to walk but recently Cooper has learned to sit upright propping up with his arms. A truly inspiring day for us all! He has coped brilliantly with everything and he never complains.
What I have learned from having a child with a severe disability is that, we can’t take things for granted. The world of disability is so up and down and we never truly know exactly what’s around the corner. Even the smallest expectations are not a given. One day things can be calm and you feel like you are making progress. Then the next day, you feel like you are back at the beginning. You feel scared, uncertain and angry at the thought of your child having to struggle with every area of their life.
Also, the world of disability can be so isolated. I feel extra worries and pressure due to having one able bodied twin and one severely disabled twin. It is soul destroying seeing one child leaving behind their twin developmentally, physically and emotionally.
I try to keep positive and remember that Cooper is alive, that is the most important outcome for us.
Read more about Cooper’s journey by visiting Miracles and Me on Facebook.