By Fiona Beckerlegge | Clinical Director
When your child is born you have such high hopes and dreams for their future, but for some parents whose babies have difficulties at birth it can be a very different story.
If a baby is born prematurely, is deprived of oxygen due to a long or difficult delivery or is severely unwell in the first few months of life, this can lead to brain damage and the baby developing cerebral palsy. Babies and children with cerebral palsy have difficulty co-ordinating movements of their arms, legs and trunk due to having very stiff or very weak muscles. This can cause them to not acheive their developmental milestones at the same time as other children, activities such as head control, sitting, crawling and walking can be delayed or never achieved. They can often also have feeding or swallowing difficulties which can result in malnutrition, and cause further delay and disability.
The earlier we can offer education, support and therapy intervention to the child and their parents, the better the long-term outcomes are for the whole family.
At KCDC, we offer education and support groups for parents of children under 2-years with cerebral palsy. The programme consists of 10 sessions, teaching parents and caregivers what cerebral palsy is, and covers practical topics such as feeding, positioning, play and communication. The groups are run by a member of the KCDC staff and an expert mother, who has been through the programme themself, and has a child of her own with cerebral palsy, so fully understands the challenges faced by the participants
The programme aims to help the parents maximise their child’s development, wellbeing and quality of life. The group also aims to provide peer support to the parents, allowing them to meet, share experiences and challenges, and learn with other parents of children with cerebral palsy.
Prossy has really enjoyed the group sessions and has noticed positive changes in her son, Albert who is 19 months old. She had a very long labour and delivery and Albert had a very difficult start to life in the special care unit at the local hospital.
“The group has helped me a lot in improving my son. Before he was not sitting at all, now he is sitting with little support. I have learnt about communication, play and feeding…now he can eat, he can laugh and play and is always happy!”
She also spoke about how the group had impacted on her and her family. She had been forced to drop out of her studies to become and nursery school teacher, to care for her son because her family rejected him and would not help her. When she attended the first few groups she appeared sad and anxious, and did not interact much with the other mothers.
“Now I can leave him with my grandmother, sister of his father when I go to school, they take good care of him. My family used to say to me - you are wasting your time with that boy, but now they understand and encourage me. I am happy that I will be finishing my studies in November and will be a teacher.”
“I feel very happy finding other mothers here. I was always sad before, but now I don’t feel lonely”
Prossy and the other mothers in the group developed a strong bond and have asked to keep meeting up now that the group sessions have finished. They met again this week and the room was filled with laughter. One week, one of the mamas who couldn’t attend the session as her baby had been admitted to hospital, so the whole group went to the ward to see her and her son to check on them. A lovely heart-warming testimony to the power of the groups and peer support.
This year, KCDC has completed 2 groups and currently has 3 more groups running and 2 more about to start in different communities across the Kabarole district. Each group involves 6-10 parents and their children. By the end of 2017, we hope to have reached at least 50 families and caregivers of children with cerebral palsy. Each 10 session programme
Since the start of the year we have had over 60 referrals of under 2 year olds with Cerebral Palsy and we have completed 1 group programme and are in the process of running a further 4 groups. Each 10 session programme costs $240 / £180 to run and will impact up to 10 children, their families and communities.
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