In 2015, April, baby Precious Blessing came into the world, panting and fighting for her life. Little did her mother, know that during the struggle to leave the womb and meet the world, Precious had developed a chronic condition.
The warrior in her has continued to fight many battles and she has emerged victorious, spreading hope for many children like her. Her mother Carol Chege shares the inspiring story…
0n a beautiful Saturday morning, December 10, 2005, I walked down the aisle with my husband, Boniface Chege. I had met him earlier in church through a mutual friend. It was love at first sight.
When we met, I was planning to go to the US for further studies. Being in my early 20s, I was not in a hurry to get married but Boniface convinced me to rethink my travel plans and we eventually got married.
Our first child was born in 2008, October. At the beginning of my pregnancy, I developed some difficulties and was asked by my doctor to be on bed rest to prevent further complications or even a miscarriage. I complied fully and carried the baby to term.
After our baby turned one, we decided to get another child. I knew it would be easier to raise two children at the same time. When they grow up together, you buy things in pairs. In June 2010, we had our second bundle of joy.
I resolved to become a stay-at-home mum and my husband would assist with most things like clinics and caring for them. The two deliveries were normal and the children never had serious health complications growing up. Along the way, I went back to work as an entrepreneur.
A few years down the line, my first two children started asking for a sibling. They were subtly backed by my dear mother-in-law. You see, my husband is an only child and his mum was always hoping for more grandchildren.
Since having more children was in line with our plans, we decided to go ahead and in June 2015, welcomed our baby girl.
My third pregnancy was pretty smooth. A day before the delivery, the whole family took me to the hospital. I went through the usual tests and the doctors confirmed everything was fine. The baby’s position, the amniotic fluid, everything tested normal.
However, during labour everything changed, but I didn’t know this at the time.
You see, my baby was quite big she weighed 4.2kgs. During delivery, she got stuck at the birth canal The labour pains started at 10:00 in the morning and she was stuck up until 2:00 PM. As an experienced mother, I noticed that this delivery was different when the labour started.
At some point, the labour pain was non-stop, unlike other deliveries. All this time, my husband and I kept talking to the doctors and nurses, asking them to do something. Some of them were rude and blatantly refused to intervene. All this while they were checking the baby’s heartbeat and inducing me.
They only decided to act when her heartbeat became faint, signalling danger. I was taken to the theatre for an emergency caesarean section at around 2:00 PM. The CS operation was very fast and in just a few minutes the baby was out. When they showed her to me, I was so shocked I had to look aside briefly.
She was struggling to breathe and there was a line cutting across her head. Her forehead was protruding and she had injuries. She was rushed to the New Born Unit which was upstairs but she miraculously began to breathe by herself right before they got to the unit. But just when we thought our troubles were over, more happened at the New Born Unit (NBU).
She convulsed during the first night. She was also struggling to breastfeed during the first week. Initially, she was fed through a tube. One night, an attendant was unable to locate her vein. They placed the syringe wrongly and covered it with a bandage.
Carol Chege, 40, with her seven-year-old child Precious Blessing who has Cerebral Palsy at their Uhuru Estate home in Nairobi on October 25, 2022.
Photo credit: Lucy Wanjiru | Nation Media Group
The drip water spilt over to her incubator where she was lying instead of getting into her body. When I went to check up on her, I noticed she was very cold. She had been lying on wet beddings all along. I called the doctor and when he came, he was also shocked. They changed the bedding and adjusted the incubator’s heating mechanism.
Unfortunately, the heat was too much, and my baby got burnt to the extent that she had a heat rash all over her body. It was a trying time for us because we experienced challenge after challenge. Eventually, we were discharged after a week and went home.
I had delivered my two children at that same hospital which made me trust that the doctors and nurses were competent. My first child was 2.5kgs at birth, while the second one was 3.5kgs. I later learned that when you are of a certain height (short) it’s unsafe to deliver naturally when the baby is beyond 3.5kgs.
At home, life went on. As usual, I breastfed my baby girl, bathed her and changed her diapers. Everything seemed okay for the first three months until one day, while sleeping, she started screaming. At first, I thought she had a bad dream.
I soothed her and she went back to sleep. This happened again and we decided to take her to the hospital. I also noticed that she had delayed milestones for a three-month-old baby. For instance, her neck was not very firm and she was not smiling, or cooing.
When we went back to the hospital, we found another doctor but the hospital had her old file. We explained our concerns, but the doctor told us not to compare the baby with others because she had gone through a lot during delivery. This sparked more questions, but we were not told whether she had developed any condition.
The doctor prescribed tablets which Precious was supposed to take for two weeks. We were also given another appointment and when we went again, we were given the same medicine. By the third visit, we decided to examine the medicine and understand what was happening to our daughter.
We looked at the hospital’s discharge summary and the word Asphyxia stood out. We googled it as well and what we found online was very disheartening. The sites said that Asphyxia caused death and so many other bad things.
We let it go and decided to go back to the hospital and inquire about our baby’s condition. The doctor told us she indeed lacked oxygen during delivery but the medication she was taking would help her. We were also advised to start therapy, three times a week.
Therapy requires a lot of time and it is quite expensive. Thankfully, I discovered a therapy centre near our neighbourhood and another mission centre, at Jogoo Road. Two years after consistent therapy we still didn’t have a diagnosis for Precious.
Later, a friend introduced me to another therapy centre in Donholm called CPSK. During therapy sessions, I used to talk to other parents and the therapist. This was my way of finding out more about the condition my baby had.
One time, Precious bit her inner cheek. As I was talking to the therapist, he assumed that she had gone through a convulsion but we found out that it was because we had missed two speech therapy sessions.
When that happens, the body gets floppy and that’s how she ended up biting herself. The therapist recommended that we see a neurologist. Since he was acquainted to the neurologist, he wrote a letter for us to take to the doctor. But just before we left the centre, I decided to read and see what was written.
Reading the letter gave me the shock of my life. What caught my attention was a phrase that read “this is a CP case child I’m referring to you”. This is how I learnt what my baby was suffering from—through a referral letter. This information was heart-breaking and I broke down at the centre.
The therapist was shocked to learn that I didn’t know Precious had cerebral palsy (CP). Together with the other staff, they took turns comforting me and made sure I was calm and composed before leaving the centre.
I went home with the letter and later in the evening, I gave it to my husband. He was shocked by the same phrase. Initially, we were told that Precious has HI2, but we later learned it is a stage that may progress to Cerebral Palsy.
Though HI1 and HI2 cases recover, HI3 is permanent. During delivery, Precious experienced Asphyxia (lack of oxygen to the brain) which resulted in brain damage and causes the Cerebral Palsy condition. We also learned that it is not recommended for doctors to deliver news about chronic illness diagnoses immediately after they get the results.
Patients and their caregivers are supposed to be given time to acquaint themselves with the condition and adjust to living with it before they are given the shocking news. This approach is meant to protect their mental health.
Carol Chege, during an interview at her Uhuru estate home in Nairobi on October 25, 2022.
Photo credit: Lucy Wanjiru | Nation Media Group
Our two older children learned about the diagnosis a bit later. We didn’t want to overwhelm them with the news. My husband and I agreed to tell them only when they were ready. It didn’t take long for them to start asking why their baby sister goes to therapy, why she doesn’t play with them outside or why the neighbour’s children who are the same age are different.
We answered these questions by explaining to them what happened during birth and how it affected her. They cried a lot after learning about her condition, but they became very supportive. Friends and family members have also been very supportive. We’ve never lost a single friend because of Precious’ condition.
I noticed that people respond according to your attitude. If you feel ashamed and miserable people will just let you be but if you accept and embrace your child, you receive a lot of support.
When we discovered the condition, I lived in denial for a while. I was angry at the hospital because Precious developed CP out of negligence. But I got to a point where I asked myself how I would want to be treated if I was Precious. I would want to be loved and cared for unconditionally.
This epiphany motivated me to accept the condition and be a good caregiver. But, it hasn’t been a walk in the path due to the many challenges we have faced. For instance, the cost of raising a child with CP is quite high. Assistive devices, like wheelchairs and standing aid, diapers, medication, and weekly therapy sessions cost money.
A CP seat can cost between Sh 45,000 to Sh60,000 and you have to keep upgrading as the child grows, though some organisations have been very charitable by handing out subsidies. CP patients have to take anti-convulsant medication. If you don’t have money to buy the tablets, a patient can easily convulse to death.
Unfortunately, CP is not covered by insurance because it is considered a pre-existing condition. There’s also stigma and misjudgement from society. Some people assume CP is caused by witchcraft or the mother tried to abort. Getting a good special school is also difficult.
When the child cannot express themselves through speech, they could be taken advantage of. Plus, some of the special needs schools are quite expensive. Caregiving also requires a lot of dedication. Feeding takes over an hour because of swallowing difficulties and you have to be very careful to avoid choking the patient with food.
As she grows older, these challenges change. Some fade away and others intensify. In the beginning, I could carry Precious on my back and go wherever, but she is growing taller and unless I move around with a private vehicle, public transport is not very accommodating. Getting house managers to assist is also a problem since some of them do not know how to care for children with special needs.
Through the seven years of caring for my baby girl, I have uncovered simple hacks that help me get by easily. When I’m feeding her for instance, I elevate her head with a pillow to make it easier for the food to go down. I’ve also developed a very strong support system.
My children and their father are always assisting with different tasks. My husband has taken up the role of a provider gracefully since I left the workforce. Sometimes friends buy diapers, and her special milk and cater to other needs. The church has also been very supportive.
Connecting with other parents
In mid-October, this year, I created a Facebook called Blessing Bonnie and a WhatsApp group to extend support to other parents on a similar journey. Acceptance took time but when I finally accepted my baby’s condition, caregiving became easier. I am more aware of my child’s needs and I’ve learned to offer the best support.
I also forgave the hospital and made peace with the situation. Sometimes I attend workshops and seminars for CP and related conditions to learn more and get encouraged. Such activities have made my journey easier and I decided to help other parents going through similar motions.
These two groups have grown very fast and we have become a pillar of each other. I share simple hacks that no one taught me. I meet parents from different parts of the country facing different challenges, but through the network, I’ve created we are able to help them.
Thankfully, people are very responsive when I request them to assist. I hope to turn this support system into a foundation, set up a therapy centre for these parents and hopefully provide free diapers and medication to those who cannot afford it.
Though the journey has been tough, my baby is truly a blessing. She has grown into a wonderful girl with a colourful personality. Precious is very friendly, jovial and social. If she could talk, she would very talkative.
I talk to her and she coos a lot. She also has a great sense of humour. When we tell funny stories, she fills the house with laughter. Recently, I noticed she loves my hair.
When we go outdoors for events or strolls she is very happy. I have enjoyed many special moments with her when we are alone at home during the day.
