By Kenneth Olajide with additional reporting by Anne Pede and Rose Owole
The dream of every expectant mother is to give birth to a healthy child, and Crystal Chigbu was no different. However, when her baby arrived, she discovered something was wrong.
Her daughter, Beulah Chigbu, was born with a congenital limb deformity.
A congenital limb defect describes when a baby is born with a missing limb (arm or leg) or part of a limb. This disorder is reported to occur in 1 in 1,000,000 children according to the World Health Organisation (WHO).
The WHO estimates that 240,000 infants worldwide die within 28 days of birth each year due to birth abnormalities. Significant birth abnormalities in low-and-middle-income nations affect nine out of 10 newborns.
Crystal said she struggled to come to terms with having a child who had a form of deformity and tried to find other alternatives by visiting other hospitals for a second opinion.
“I was shattered and heartbroken when the doctors told I and my husband that our newborn child was missing a bone in her right leg and also that her knee cap did not form.
“The Doctors said our baby had what was referred to as Tibia Hemimelia which is a type of Congenital Limb Deformity (CLD). We were told we needed to amputate the leg so that she could live a normal life”.
She said the struggle worsened when Beulah, her daughter, started asking questions.
“One day she came home from school and asked: ‘Mummy, why am I crawling when everyone else in my class is walking?’”
And this prompted her and her husband to go ahead with the procedures to have Beulah’s leg amputated. Crystal said.
A year later, Beulah got her first prosthetic limb and was really excited to walk. Chigbu then began to share her story online to inspire parents who were in a similar situations.
She however did not stop at sharing her story as she went further to start a foundation that provides recycled prosthetics and other walking aids for children 18 and below afflicted with congenital limb deformities, considering how expensive it is to get an artificial limb.
Dan Eboh is one of the parents whose child has benefited from the Irede foundation.
Dan’s daughter, Zuriel, was born with a congenital deformity called Proximal femoral focal deficiency.
A Proximal femoral focal deficiency (PFFD) is a complex birth defect in which the upper part of the femur bone (in the thigh) is either malformed or missing, causing one leg to be shorter than the other.
This was devasting for Dan and his wife who had to wait for about four years after getting married to have a child.
“Before we left the hospital, the doctor insisted they run another test on Zuriel, and if they find any other abnormality that could be life-threatening, they advised that it would be best to terminate her life. But fortunately, no other abnormality was found”.
They, however had to confront the challenge of adjusting to life with Zuriel, who needed extra care. Added to this was the funds for procuring a prosthetic limb needed to make Zuriel live a normal life was not available. According to Dan, the assistance from Irede changed everything.
Another beneficiary is Stella Ederiene, whose daughter could not walk on her own because one leg was longer than the other, and she had to carry her on her back sometimes over long distances.
She said the prosthetic limb she got from the foundation made all the difference in the world for her daughter, as they would never have been able to afford it on their own.
Bukola Omotosho is the Principal Consultant at Boldcare Prosthetics, and she says Prosthetics are not cheap.
The cost of prosthetics, according to Omotosho begins at 400,000 naira with some going for as high as 5 million naira.
With at least 40 per cent of Nigerians living below the poverty level, the cost of even the cheapest prosthetic is out of reach of the average Nigerian, and this is coupled with the fact that children need to change their artificial limbs as they grow.
While the figures are difficult to come by, a World Bank report estimates that over 25 million people in Nigeria suffer from a disability.
People suffering from any form of disability find it difficult to survive because of discrimination and stigmatization and a lack of basic facilities to make life easier.
This is even worse in Nigeria, where although President Muhammadu Buhari signed a bill that criminalizes discrimination against persons with disabilities, the facilities and support needed to live a normal life are unavailable.
How does it work
The Foundation carries out its mandate by educating caregivers and society on congenital limb loss; and how to relate and care for children with this kind of loss.
The foundation also works to empower child amputees to live their lives to the fullest; via mentoring/coaching sessions and the provision of prosthetic limbs to indigent children between the ages of 1 -18 years.
Children and affected families are also encouraged to forge ahead despite the challenges of limb loss via the establishment of support groups.
The foundation currently has a laboratory in Lagos for assembling prosthetics and Mrs Chigbu says 147 limbs have been provided for 103 children since inception in 2012.
Challenges
Prosthetics are expensive and can only withstand 3 to 5 years of wear and tear, according to Hope Adeyinka, a Nursing Officer at the National Orthopedic Hospital.
They have to be changed once they are worn out, and this is not easy considering the high cost of purchasing them. Dan, for instance, says he has had his daughter’s prosthetics changed twice.
Ms Chigbu says she cannot do it alone considering the high cost of prosthetic limbs and called on the government to provide access to health care as well as support for young amputees, saying the high price of prosthetic limbs has made it impossible for a lot of people to get it when necessary.
“A lot of people want to get prosthetic limbs,” she said, “but they cannot because of the huge cost of getting a prosthetic limb.”
The foundation has its main office in Lagos, so it is difficult for people in other parts of the country to access its facilities.
This story has been supported by Nigeria Health Watch through the Solutions Journalism Network, a nonprofit organization dedicated to rigorous and compelling reporting about responses to social problems.
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