Susan’s journey of hope – she emerged from utter stress and misplaced hopes to find her calling and live victoriously as a parent facing child cerebral palsy.
My name is Susan Njeri. I am many things but most importantly I am a woman, a mother to three wonderful children – Princess, Prince and Parsley – and wife to Patrick Karubiu.
Outside my family setting and out in the world, I am a mother to all children with cerebral palsy both known and unknown to me. I am the founder of Special Caregivers Space (SpeCS). This is a Community Based Organization dealing with children with Cerebral Palsy (commonly known as “CP”) and their caregivers.
I am deeply cognizant of child cerebral palsy because it is rooted in my life
Princess my first born and only daughter who is six years old has child cerebral palsy. She also has profound hearing loss. She is a lovely sweet girl and my love for her runs deep. It is amazing that I can at this point narrate the happenings involving CP without feeling remorseful or teary.
Cerebral Palsy (CP) is neurological condition caused by brain damage that may occur before, during or after birth depending on the cause. I am deeply cognizant of what parenting a child with cerebral palsy means; because CP is rooted in my life.
When expecting Princess, I didn’t know much about the pregnancy journey and what to expect during labor. I knew the theory of it but not the practical issues. I had taken up a nursing program sometime earlier and knew that at some point I wanted to have children. However, I hadn’t quite thought through the actual pregnancy and birth process.
During my pregnancy I was very cautious and started my pre-natal clinic sessions in the first month. I followed these through, religiously, to the last month. There was nothing unusual observed.
I thought my baby had choked to death and I panicked!
I had a very short labour experience, but had cold chills running down my spine as I was told that my baby’s cord had wound around her neck. As a matter of fact, I thought my baby had choked to death and I panicked! However, her cry after about a minute or two gave me comfort.
We were discharged two days later and proceeded home. On the fourth day, Princess stopped breastfeeding and stopped crying completely. My husband and I rushed her to hospital.
She had severe jaundice, was admitted, put under antibiotics, photo therapy and blood transfusion. During this period, I developed stress! This lead to interference with my breast milk production and I could hardly produce the 60mls required every 3 hours. A nasal-gastro-intestinal tube was used to administer milk to Princess. It was a really hard time, but I thank God we were discharged after 14 days.
Princess had profound deafness
Upon discharge we were advised to take Princess for an auditory test after two weeks. Diagnosis showed she was having hearing loss. There was suspicion that this was a result of the antibiotics she was taking.
The saddest day of my life was however yet to come – and it arrived when indeed results showed that my Princess had profound deafness. She was only 6 weeks old then. I cried all the way home and cursed the doctors who saved her life but left her deaf!
I noticed that she didn’t have head and neck control
Days passed and at four months I noticed that she didn’t have head and neck control. I visited a doctor who sent us to a neurologist, who in turn referred us to an occupational therapist. It is at this point that I got the information that my child had cerebral palsy.
There was not much explanation or counseling given about child cerebral palsy; all I was advised was to be taking her for therapy. I did this religiously. I had misplaced hopes, comparing child cerebral palsy to conditions such as rickets. Children suffering from rickets recovered fully after after 2-3 years of regular therapy and good diet. So I desperately took my baby for therapy, looking forward to recovery. I couldn’t hold back my tears during therapy sessions when I saw painful massages and muscle stretches administered to her.
I had come to fully understand the really meaning of CP
As the days went by, I got courageous and my interest in knowing what child cerebral palsy is and how to manage it grew. I learnt how to take therapy. I got stronger and the therapy sessions became enjoyable, not because it was enjoyable as such, but because CP developed into a line of interest for me.
Days turned into months and then into years and little change was achieved.
By this time I had come to fully understand the real meaning of CP and this put me at ease. My mind opened to new beginnings after realizing that CP is a long term condition. I fully accepted child cerebral palsy and its parenting responsibilities. There were no more tears and no more denial.