Imagine spending hours in labour and then giving birth to your first child. Watching you child grow and adjusting your life as a mum when in all honesty you have just reached adulthood and haven’t a clue. Now imagine thinking that something isn’t right? Your child isn’t sitting unsupported yet at a year old. Taking your child to the Drs, having tests, thinking worst case scenario is there is something wrong with your child’s hips, and may need leg casts. At 14 months old being told that Social services were going to attend a meeting with doctors. Social Services? Why them? Why are they being involved? To be told and I quote “It is usual for Social Services to be involved with a Cerebral Palsy diagnosis” and that was that. You are barely an adult and your child, your beautiful baby has cerebral palsy.
My sister Joanne found out she was pregnant when she was 17. I remember feeling really excited at expecting a new niece or nephew. The greatest thing was both my sisters were pregnant at the same time, and due within a couple of weeks of each other. So not only was I going to meet 1 niece or nephew but I was going to meet 2. I was 15 and already had 2 nephews. My sister wasn’t the brightest spark and we all used to have great fun trying to wind her up.
Jo’s pregnancy was pretty much straight forward apart from a bleed at 29weeks which meant she needed steroid injections in case for early birth. baby hung in there and Jo ended up going 2 weeks over due and need inducing. The birth wasn’t straight forward at all, baby’s heart rate was falling, jo’s was increasing and the midwives became concerned. Eventually Jo delivered a healthy 6lb15 bouncing baby boy named Leo. 9 days later my eldest sister Tasha gave birth to a beautiful 9lb 1oz baby girl, Elizabeth.
Jo adjusted to being a mum really well but as Leo grew older she started to notice little things. The main one being he wasn’t sitting unaided, other children his age were but he wasn’t. Jo spoke to health visitors who explained it was normal for children to develop at their own pace. If he wasn’t sitting unaided by 12* months then they will be concerned. Leo reached a year and he was still not sitting unaided so Jo took him back and they ran tests. Meanwhile she did her own research and figured it was a hip problem and he may need to wear leg casts.
At 14 months old jo received a letter inviting her to a meeting with Leo’s doctor, a physiotherapist and social services. She rang and spoke to a lady. Jo wanted to know why social services were involved, did they think she had something to do with it? The lady said “it is usual for Social services to be involved in a diagnoses of Cerebral palsy” taken aback jo said ” but Leo doesn’t have cerebral palsy” the woman simply said ” that is not what is written here, it says Diagnosis – Cerebral Palsy” That was that. Leo aged 14 months old now had cerebral palsy and none of us knew a thing about it especially Joanne.
Life after diagnosis
Jo and Leo lives revolved around doctors appointments, hospital appointments, Physiotherapists, occupational therapists and more. Pretty much every week there was an appointment of sorts. Leo was soon diagnosed with Spastic Diplegia a form of cerebral palsy. His muscles are tense and they spasm. His legs become tight and his joints will stiffen causing him pain. It is a milder form of cerebral palsy and it doesn’t affect Leo’s cognitive behaviour, although milestones are reached a little later than his peers. Jo was told by doctors that Leo may not walk independently, if he does it will deteriorate and he will become wheelchair dependant.
Jo soon realised what this meant. It meant Leo would probably never be able to play outside with friends, something growing up kids do! Leo would probably never ride a bike or play on a scooter. He would struggle to go from room to room let alone climb stairs. There are so many things that with this diagnosis leo would really struggle with and that was something that hit us all hard. Especially Jo. Leo did learn to sit unaided, at 16 months he sat up.
Imagine being told your beautiful baby boy is going to become wheelchair reliant what would you do? Would you accept this diagnosis? Or would you try and find a cure? If not a cure then something that would postpone the inevitable for as long as possible?
Joanne started to join a few support groups of those who’s children have cerebral palsy and it was great for her to be able to ask questions and get real life responses. Such as “How do you potty train a child who can not easily reach the toilet. At the age of 2 Leo was just learning to stand and was given a walking frame to help support him. He became a dab hand on using it to support him whilst walking.
*Sorry about the quality of the video*
Leo was having regular physiotherapy to help reduce the stiffness and tightness in his muscles to help with mobility. He was also having regular botox injections in his legs and he wore splints on his feet to help keep his feet in the best position. The splints often rubbed on his feet causing blisters and pain. So not only does he suffer with leg spasms which often wakes him, he also suffered pain to his feet.
It was on a support group where Joanne was told about a pioneering operation called Selective Dorsal Rhizotomy (or SDR for short) An operation which at the time was only available in America but the results were just amazing. It gave children like Leo a whole new release on life. The operation involves cutting some sensory nerve fibres that come from the muscles and enter the spinal cord. Basically loosening the tightness and stiffness making mobility easier. The more Jo and our mum researched the operation the more excited we all became. There was the opportunity for Leo to be a kid. He could walk independently! No frame, no wheelchair but actually on his own!