Saving Baby Joshua: Mother’s search for brain swelling cure

When women give birth to a child with deformities, they get stressed and end up grappling with unanswered questions, since some communities believe the women must be cursed.

In some African traditions, men are forced to marry another wife, while the mother with a deformed child is divorced or kept in a separate house.

However, medics say some conditions facing little babies are not brought about by a curse. One of them is hydrocephalus, which confounds many women, families and the society whenever a child develops the condition.

Paediatric neurosurgeon Dr Martin Muthinja from AIC Kijabe Hospital says hydrocephalus entails an abnormal buildup of cerebral spinal fluid (CSF) in the cavities of the brain.

CSF protects the brain as a shock absorber, supplies it nutrients such as oxygen, and also removes waste from it. Too much of CSF causes the head to steadily grow in size. It could lead to convulsions and at times damages the brain.

Dr Muthinja says the condition affects children, adding that it is noticed before or after the child is born.

MOTHER'S SHOCK

Cynthia Muchiri is a mother of two who works as a civil servant in Nairobi. She learnt her son had started showing signs of hydrocephalus condition when she was 32 weeks expectant.

Cynthia says she did several scans in different hospitals, hoping to hear a different verdict, and she started wondering what would happen to her baby.

“At one of the hospitals I visited, a doctor told me after the scan that children with such deformities need to be aborted, but I declined since the pregnancy had grown and I knew it was wrong before the eyes of God,” she said.

“I used to encourage myself that children are gifts from God and we should not abort them. I prayed a lot, asking God to give me the strength to get a good and healthy baby than the one each doctor was telling me I was carrying.” 

Cynthia later developed labour pains and was taken to MP Shah Hospital in Nairobi, where she was blessed with a boy through caesarian section and named him Joshua Muchiri.

“The baby had a hole in the spine and curved arms and legs. He was brought to my maternity bed and I breastfed him. I couldn’t believe he was the one. At one time, I asked nurses to take him away. I was so stressed, I cried and prayed to God,” she said.

Joshua was taken to theatre and the hole was covered. However, he later developed hydrocephalus.

7 SURGERIES IN 2 WEEKS

Cynthia says the now one year and eight months old boy underwent seven surgeries in two weeks in a bid to control the hydrocephalus.

She started looking for a hospital where she could be taking her son to so as to control the condition, which disturbs him and her.

“I asked God to help me accept the condition of my baby so I could help my family accept my son. Mothers with children like mine need to be shown love, acceptance and be given hope,” she said, adding that her family has been supportive.

“I’ve met with women who claim they were sidelined by their people due to getting such children. These issues are there, and people really need to be informed that it is not someone’s wish to get such a child.”

Cynthia now takes Joshua for a checkup and draining of the CSF at AIC Kijabe Hospital. Before coming there, she had spent more than Sh1.5 million looking for treatment.

However, at Kijabe, she was referred to Bethany Kid’s Hospital, a special section for the children. Cynthia told them she was looking for help because she did not have money.

“When they learnt the challenge I had and the condition my son was in, my son was quickly admitted and treatment started. I was busy telling them I do not have money to pay for those services, but they told me not to worry,” she said, speaking at the facility.

“What also shocked me is that they first prayed for him and counselled me, something I had never seen before. Both the doctors and nurses are so caring.”

Dr Muthinja says they handle close to 60 cases of hydrocephalus conditions every Tuesday, when they hold clinics at the facility.

“We hold a special clinic for patients suffering from hydrocephalus and spina bifida condition every week. Spina bifida is a defect that develops at birth, where the spinal cord fails to develop properly. At times, it causes a baby to develop hydrocephalus,” he said.

TREATMENT AND MANAGEMENT

Neurosurgery head at the hospital Dr Kim Steffan says hydrocephalus is treated through surgical procedures called Endoscopic Third Ventriculostomy/ Choroid Plexus Cauterisation (ETV/CPC). The ETV method is where a doctor creates an opening to drain off the unnecessary CSF.

Dr Steffan says 70 per cent of patients suffering from hydrocephalus heal, saying they need management such as visiting hospitals for CSF draining. Patients start speaking well, walking, eating and their head sizes reduce, he says.

Children are the most affected since they do not tell what they feel. The neurosurgeon urged parents to be very cautious with the changes they notice in their babies every day.

He says hydrocephalus symptoms include increased head circumference, sunsetting eyes, veins on the head, separated skull bones and at times, vomiting and shivering.

Some parents come to the hospital to seek help over the symptoms, without knowing the real condition affecting their children.

Dr Muthinja says disease is commonly reported in many countries in Africa and Asia, adding that not much study has been done about the disease in Africa.

However, the Health ministry indicates that 124 children are born per hour in the country, whose population stands at over 52 million people, and an estimated 1,000 children are born with the condition every year.

The major hospitals dealing with the condition in the country include Kijabe, Moi Teaching and Referral Hospital in Eldoret, Coast General Hospital and Kenyatta National Hospital, where 25 paediatric neurosurgeons who treat the conditions are posted.