Raising a child with spina bifida

When Juliana Auma was given folic acid and iron supplements in one of her antenatal visits, she threw them away. What she did not know was that the tablets would prevent her child’s birth defect

Juliana Auma Okoth’s daughter, Phoebe, was born with spina bifida and hydrocephalus 24 years ago. Then, Juliana was just a teenage girl in secondary school. “I was embarrassed when I found out that I was expectant and the birth of Phoebe sent me into depression,” she narrates.

 She realised Phoebe was special immediately after birth when the nurses at Pumwani Maternity in Nairobi informed her that her daughter had two heads: a normal one and another at the back of her head. She was thrown into confusion: her child had a defect she knew nothing about. As a shocked and inexperienced teen mother, she was distressed to the point of failing to care for to her child.

No survivors

“Another nurse told me Phoebe’s head was full of water and she had no brain and she would die because children like her never survived. I cried the whole night and slept for two days until the newborn unit nurses came looking for me since I had not breastfeed my child for two days after birth,” recalls Juliana.

 Before giving birth to Phoebe, spina bifida, hydrocephalus and folic acid were foreign words to Juliana. 

Spina stands for the spinal cord and bifida means opening. With this condition, the spinal cord does not close normally, leaving a hole. It can cause paralysis of the lower limbs. Most of the children with spina bifida are not able to control their bladder and bowel function.

Some develop hydrocephalus as a complication of spina bifida. Every person’s head produces water called cerebrospinal fluid, which is  supposed to be absorbed naurally by the brain.  However,  for children with hydrocephalus, the production of this fluid is higher than its absorption, meaning that they might need to be  surgically drained. 

When she was four months pregnant Juliana was given some folic acid and iron tablets during one of her regular visits to the clinic, but she threw them away. What she did not know was these tablets were meant to prevent birth defects such as spina bifida.

 “Considering those tablets made me vomit a lot, I threw them away not knowing how important they were for my child’s wellbeing. Even if I was aware of folic acid, I couldn’t have believed that those small tablets would have a great impact on the life of my unborn child,” explains Juliana.

According to Juliana, the journey of raising a child with spina bifida has not been an easy one. Poebe has undergone nine major surgical procedures since birth. 

“I was scared every time she checked in for the procedure,  which would not have happened without the help of well-wishers who funded them,” recalls Juliana.

She adds that her daughter  uses a catheter to drain urine after every four hours. She also uses a drug known as oxybutynin given to them by BethanyKids Children’s Centre, which helps Phoebe’s bladder to expand and hold urine so she does not get wet within three hours and at night. 

“I am happy that BethanyKids understands the needs of people with the two conditions. They offer services on bowel and bladder management including supplies such as catheters, oxybutynin, lubricating jelly, and bowel wash out kits, folic acid, and shunts. They also train parents on how to provide their child with holistic care; rehabilitation and primary prevention including home-based care,” says Juliana.

Cost and stigma 

“Today, Phoebe still needs expensive therapy, which is important for anyone with any form of disability, but it is not affordable to the common households in Kenya. Medical care that she needs is more on rehabilitation: she has to undergo an annual renal ultrasound to check the condition of her kidneys, and has to attend the BethanyKids outreach clinics occasionally to have her health continually monitored,” Juliana explains.

Juliana notes that stigma is still visible—something she attributes to lack of information on the two conditions. It is for this reason that she founded Spina Bifida and Hydrocephalus Association of Kenya (SHAK).

“I started SHAK to advocate for the inclusion of people with spina bifida and hydrocephalus in Kenya. For a long time this category of disability has been under the minority disability yet we are quite a significant percentage in the population.As a young parent and a first-time mum, I needed a support system, but I did not have any. This is what we offer at SHAK,” she explains.

To parents raising children with spina bifida, hydrocephalus or any other form of disability, Juliana tells them to learn, read and explore more about their children’s condition. 

“We can only care so much for what we know. Join a support group of parents of children with special needs where you will draw your strength. As they share their challenges and achievements, you will be sure you will not give up on your child,” added Juliana.