At five years, Baby Zuri still can’t open her palms

rare diseases, joyce ndung'u, baby zuri, turner's syndrome
Ms Joyce Ndung’u, Zuri’s mother.

What you need to know:

  • According to Zuri's mother Joyce Ndung’u, the baby has had delayed milestones since birth.
  • She was born with a weak muscle tone, was not able to breastfeed and was mainly on blended food for the better part of her early life.

While children her age are out and about being children, Zuri, 5, is battling a condition that has stunted her growth.

She has Turner’s Syndrome, a condition characterised by traits such as short stature, stunted growth and low immune system. She also has skeletal anomalies, which have especially affected her hands. She has short hands and cannot open her palms. At her age, she weighs only 10.5kgs. The weight of a normal five-year-old girl child is 19kgs.

According to her mother, Joyce Ndung’u, Zuri has had delayed milestones since birth.

She was born with a weak muscle tone, was not able to breastfeed and was mainly on blended food for the better part of her early life.

“We started her on solids at three years. It was also during this age that she started standing on her own and a few months later she started walking,” she adds.

According to Joyce, they also had difficulties with toilet training and it was at slightly above five years that Zuri was able to use the toilet without too much messing on her clothes.

Apart from that, Zuri is not able to hold things firmly using her hands, which has affected her ability to write, feed or clothe herself. Lack of speech has affected how she interacts, at times ending up being misunderstood. 

This has come with a lot of stigma, says, Joyce. “The society we live in does not understand why your child cannot walk, talk and is still in diapers past the age of three. Some people think there's something I am not doing right. Also, getting a good nanny who is patient and willing to understand Zuri has been difficult,” she explains. 

Joyce has had to change a great aspect of her life in order to accommodate her daughter’s needs. “This includes adjusting my expenses to accommodate her needs such as nutrition, medication and therapy. I have also made it my duty to be her advocate and educate people around us about her condition.”

According to Joyce, she had a perfect pregnancy. “It was as if I was never pregnant except for a bulging stomach. I was extra active, energetic and glowed throughout the experience,” she says.

When Zuri was born through an emergency caesarean as Joyce had dilated only 4cm and the baby's head was stuck in the cervix, she did not cry, and for a moment Joyce says she thought it was a still birth. “The baby was immediately taken to the nursery as  doctors concluded that she had congenital and skeletal anomalies, a leopard skin and a weak muscle tone.”

Upon recovering from theatre, Zuri was wheeled into the neonatal intensive care unit, where she was put on oxygen as she was not able to breathe properly on her own. “It was here that a paediatric cardiologist broke the news that Zuri had two heart defects but he assured me that they would heal with time. Another check-up was required at week six.” 

Upon discharge, Zuri was put on occupational therapy as Joyce went about the usual antenatal visits. “She was not adding weight and her feeding was very poor. With every clinic visit came new nutritional suggestions, but none seemed to work. Zuri weighed 3.1 kilogrammes at five months.”

A thyroid test was conducted later and it was discovered that Zuri had hypothyroidism — slow metabolism — and was put on medication.”

One evening, she says, Zuri had difficulty breathing and had to be rushed to a paediatrician, who conducted an X-ray. “Her heart was larger than usual and we were referred to a cardiologist. Her diagnosis was that she undertakes an open heart surgery immediately as she had less than one month to live. Since she was underweight, the surgery could only be done in India.”

But as they prepared to travel, Joyce had a karyotype test done,  which confirmed that her daughter was suffering from Turner’s Syndrome. “Thanks to family and friends, we were able to have a successful surgery in India on April 6, 2016.”

Joyce says she thought all would be fine and went back to work, but this was the beginning of sleepless nights in hospital corridors. “Zuri suffered several attacks from pneumonia, constipation, constant high fevers and recurrent ear infections. I was in and out of hospital and on different medication.”

After three distressing months, Joyce had to quit her job in a local bank to take care of the baby. “I also stopped the occupational therapy as this strained her heart,” she says. 

Zuri has to be on growth hormone therapy, which she started when she turned two. “I give her somatropin jab every day before bedtime, and will do so till she gets to puberty — 11 years. I procure the drugs quarterly from India, which cost more than Sh20,000 every month.” 

Zuri also has to be on occupational therapy, three times a week, which is aimed at improving her ability to perform activities using her hands. This also helps to straighten the back. It costs Sh21,600 per month.” 

Weight management is also done by stabilising her thyroid functions and through a nutritionist’s diet. “During puberty, she will undergo oestrogen hormone therapy and will  have to manage her ovaries, hoping she can have children later in life through In vitro fertilization,” says Joyce.

Her experience raising a child with the condition inspired her to launch the Turner Syndrome Foundation Kenya. Through the platform, among other initiatives, Joyce hopes to create awareness, take part in research programmes and lobby with insurance companies and different government agencies on drug accessibility and medical care.