Our Daughter with Cerebral Palsy

The birth of Christabel, a narration by the mother.

Christabel developed cerebral palsy at birth on 16 December, 1989 more than a month before her expected date of delivery. Her expected date of delivery was 25 January, 1990. Looking back, I can remember, I had obstetric (pregnancy related ) problems until I delivered at a clinic and I was discharged 8 hours later.

She weighed 2.3 Kg which was below the normal birth weight of 2.5 Kg and above.. Within 3 days she developed jaundice which kept getting worse to an extent that she stopped breast feeding. We rushed her to the hospital where she was admitted to the Neo natal Unit, she developed septicemia (an infection in the blood) she had to be put on photo therapy and intervenous medication. I felt really sorry for she was so tiny. Within 24 hours, she showed signs of improvement, by the fourth day, she was alright and had enough energy to breast feed. We were discharged on the seventh day.

Disabled child in walker

© Photographer: Jarenwicklund | Agency: Dreamstime.com

Delayed Milestones

Everything seemed normal by then, she put on weight, by the end of three months, I noticed that she could not hold her head. I took her to the local clinic and was told that maybe it was delayed milestones, I should just be patient. By the end of fourth month, she could not sit and just appeared to be floppy, her hands and legs felt stiff.

My husband then arranged that we see a consultant peadiatrician who diagnosed her with Cerebral Palsy. He counselled us about Cerebral Palsy and said her milestones will be delayed. This was a challenge, we were told that she needed physiotherapy on daily basis and so we started with physiotherapy.

I was taught some exercises to do at home but I also had to take her to the physiotherapist three times in a week. The process was really slow for one to note any improvements, but as parents we never gave up, we continued with the physiotherapy.

By the end of the fourth month, it was clear that Christabel was not growing as expected or normally. All I wanted was to do my best to revert things to as near normal as possible. Initially, it was really difficulty for me to accept the situation, for I kept hoping that she would improve, but then everything was really slow. With confirmation from the consultant that she had Cerebral Palsy, we had to adjust to accepting that we had a daughter who was not growing normally.

We had to create time to take her for physiotherapy and also do exercises on her at home. The father was always there for her, sometimes more than I had been. He was always trying to find out more about Cerebral Palsy and how to handle or improve the condition of our daughter.

Together, we have treated Christabel like any other child in our family. As a result members of the extended family, neighbours, the local community and fellow church members have been very supportive, and showing their love to Christabel and this has inspired us as parents.

In 1993, a friend to my husband based in Namibia came to Zambia and met Christabel. When he went back to Namibia, he arranged for a consultant Physiotherapist to see Christabel in Namibia. We travelled to Namibia and after the assessment, she recommended that Christabel be taken to a Cerebral Palsy Rehabilitation Centre in Johannesburg, South Africa.

This centre was run by the Cerebral Palsy Association of South Africa. As a family we were faced with the challenge of deciding on whether or not to take a small baby of about 3 years to a foreign country and to leave her there on her own. After some protracted discussions on the matter, we reluctantly decided to take the child to Johannesburg.

We took Christabel to the centre and my husband and I stayed in Johannesburg one extra night before leaving for home. This was the longest night in our lives because we could not sleep. I was crying most of the time and my husband was also very sad to think that we would leave a small child on her own at the centre far way from home. She stayed at the centre for two years. At the time she came back to Zambia, her speech had improved and she was able to sit on her own.

When we met friends and relatives one of the first things they asked was about Chrisatabel and whether she was alright or not. Fortunately, she has enjoyed very good health although occasionally she falls sick with one of the common diseases such as cough, cold or malaria. We promptly attend to her once she is unwell.

The initial feelings

The initial realization that Christabel had Cerebral Palsy for me as a mother was disbelief. I found it difficult to accept that I had a daughter who had Cerebral Palsy. In fact I was in denial and kept thinking why me, my God. This was my first daughter, really beautiful but taking too long to talk to me and taking too long to sit.

Despite my medical background, I was desperate to revert things to normal to the extent that I even went to traditional healers and followed what ever instructions I was given. My husband was not part of this, in fact he disapproved of the idea but I felt I was the one who carried this child until I brought her forth into the world, so I had my way.

This was when she was about 6 years old and this went on for about 6 months. However, one day on my way back from the traditional healer, I realized that I was testing God and that God gave me this child for a purpose, so I told myself that It was the last time I was going to the traditional healer. I decided that in whatever state she was, she was my child and I would just continue with physiotherapy.

Care for a child with cerebral palsy

Initially, as parents, we had to do extra duties for this child, she was not able to feed bath or use the toilet on her own. However, at age ten she was able to eat on her own and use the toilet on her own. At age 15 she was able to bath on her own. She had her first mense when she was 12 years old but of course I had prepared her psychologically, by explaining what it was.

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I had to help her with the managing of the menses up age 16, but later on, she was to take care of herself to my satisfaction. The only problem is that during this period she stays at home and misses school. As parents we feel it is safer and appropriate for her to be in comfort at home during this period.

Support from other members of the family and the extended family

Our other children have been extremely good to her and whenever, we are not at home, they take care of her. Even the extended family members have been very supportive. She has the belief that one day she will walk and she says that day there will be a great party at our home. Sometimes she says things that almost make me cry for example, she would say “Mummy, when I start walking, you will be sending me to do chores for you, or if only I could walk, I could have helped with sweeping the house”. We treat her like any other child. She inspires us with her positive attitude towards life. She never forgets a face and each time she sees someone she knows, her face beams with happiness, with a wonderful warm welcoming smile. She is good at remembering people and their names.

She will always put a name to a face. Most times she is the first to pass a greeting before the other person greets her. She is also amazing in that when she is upset, she will show it, but only for a short time, the moment you say you are sorry she will smile and she will say some loving words.

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