“Cerebral palsy is not a disability sentence”

Phyllis Waruguru has raised her son Dan, who has CP, for 15 years and is now looking forward to stem cell therapy to correct it. PHOTO| COURTESY

What you need to know:

  • Twelve hours later, I gave birth to a baby boy. He did not cry immediately after birth but a few seconds later, he let out a weakened sound.
  • I would later learn that this delay had been caused by the baby’s exhaustion and lack of oxygen.
  • Perhaps I should have raised concern, but I was a new mother. The pain and the exhaustion were replaced with immense joy.

“My name is Phyllis Waruguru. I am a mother of three – two boys and one girl. My first born is my son Dan. He was born on March 24, 2003. I had been looking forward to my delivery since I confirmed that I was pregnant but just like any other new mother, I was anxious. I had heard (terrible) stories about labour.

“Meanwhile I attended all clinics and had no complications. I attended my last clinic in the second week of March. The doctors instructed me to be watchful and rush to hospital in case my water broke or labour pains kicked in before my due date. While relaxing at home on the evening of March 23, my water broke. It was at about 9pm. I was rushed to a nearby hospital in Gachie, Kiambu, where I was admitted at around 11pm. I requested for a Caesarian section, which the doctors refused.

“Upon examination, though, the nurse said that my cervix had effaced but it was not well dilated for delivery. They put me in forced labour. Over the next 12 hours, the horror stories I had heard became my reality. I screamed, kicked, and pulled my bed from side to side in pain. I heard one nurse make a snide remark that my baby would not survive if I continued to overreact.

“Twelve hours later, I gave birth to a baby boy. He did not cry immediately after birth but a few seconds later, he let out a weakened sound. I would later learn that this delay had been caused by the baby’s exhaustion and lack of oxygen. Perhaps I should have raised concern, but I was a new mother. The pain and the exhaustion were replaced with immense joy.

DID NOT HOLD HIM FOR LONG

“I did not hold him for long though. The doctors said they needed to keep him in the incubator and carry out tests and observations. He stayed at the incubator for nearly a week, which alarmed me. I wondered what was wrong since I would only have expected him to be hosted in an incubator if my pregnancy was premature. But the doctors assured me that all was well. The puzzles began to fit in three months later when I noticed that his neck was so weak that he could hardly hold it up in any position. 

“I took him to Gertrude Children’s Hospital where a pediatrician concluded that my son had contracted cerebral palsy, a neurological condition that usually occurs during fetal development, during childbirth, or shortly after a baby is born.

“He explained that the most likely cause was my prolonged labour, which had deprived the baby of oxygen and damaged a part of his brain associated with movement and muscle abilities. To make matters worse, he predicted that the most likely effects of cerebral palsy were speech and body control difficulties. At that moment, I wished that I was in a dream from which I would soon wake up. But it wasn’t a dream. 

“Raising a child with cerebral palsy is not a walk in the park. There were times when I would sit back and start to question God or blame the doctors and nurses for bungling my delivery. I would think about the future and tremble at the fear of the unforgiving, tough life that my son would face. How would he manage it? Would he be man enough? Would he find a girl who would love him for who he is? Would he blame me for his condition? 

PUT UP A GOOD FIGHT

“Stereotypes from people did not make it any easier to bear. I remember a while back, I saw a neighbour’s child standing by their door as it rained. His mother was not in. I called him over to my house for shelter. He was cold and shivering. I gave him one of Dan’s woolly sweaters to warm him up. But when his mother came for him, all hell broke loose. She asked him whose sweater he was wearing and he said it was Dan’s. She pulled it off him and threw it on the floor as she cursed. She told me off and accused me of trying to pass my son’s disability to her child. This really hurt. I locked myself in my bedroom and really cried. It is the most defeating moment I have had in bringing up my son. 

“Despite such challenges, my son has put up a good fight. He is now in class eight and I am praying that he shall do well in his KCPE exams later in the year. In his last assessment test, he posted an impressive 300 points. Nonetheless, he still has difficulties in walking without support. He also cannot bathe himself. 

“I delivered my other children through Caesarian section. I was not ready to go through another bungled labour process. I thank God that Dan’s siblings have wrapped their hugs around him and accepted him. This has been his greatest motivation in improving his abilities.

“Currently, he is hoping to travel to India for specialised stem cell brain treatment, and I am trusting that God will grant me the wherewithal to meet his bills. I have also formed a support circle with other mothers raising challenged children. Cerebral palsy is not the bogeyman that many people make it out to be. It is manageable and a child living with it can go on to have a fulfilling life.”