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Parents of seven-month-old boy with rare deformity are going flat out to raise millions for his treatment in the US
It’s a decision no parent should have to make: to choose between amputating your child’s legs or trying to do the near impossible – raise R3 million to fly across continents to give him a chance at being able to walk.
That was the decision Nthabiseng Nhlanhla (31) and her husband, Mzwakhe (34), had to make just six days after their twin boys Philasande and Mnqobi were born seven months ago.
Mnqobi was born with the congenital deformity tibial hemimelia, which manifests as a shortened leg with knee and ankle deformities.
The condition affects both his legs, which has resulted in them being turned inward.
According to the Paley Orthopedic and Spine Institute at St. Mary’s Medical Center in Florida – the foremost institute for technologically advanced treatment of such cases – this condition is so rare, it affects only one in a million live births.
The couple only found out something was amiss with their child in the third trimester of Nthabiseng’s pregnancy.
By then they had thought they were out of the woods after an anomaly test they did at 14 weeks, costing R8 000, failed to pick up anything.
“The doctors said that the reason the tests didn’t pick up the condition was because they were mainly intended for conditions such as Down Syndrome or brain anomalies. You can’t really test for everything, because you don’t know what you’re looking for,” Nthabiseng said at the family home in Johannesburg.
The twins were born at Sandton Mediclinic at 37 weeks of gestation via emergency Caesarean section.
Going into the birth, Nhlanhla said she was scared after doctors spoke about there being something wrong with the one twin, but neither they nor she could know beforehand what it would be.
“I was grateful when he came out and I noticed he had legs and toes, and thought that it looked more like a club foot. If it was club foot we’d be fine,” she continued.
Club foot is a treatable congenital defect that results in one or both feet being twisted out of shape or position.
But it wasn’t that. In fact, six days later, a resident orthopaedic surgeon delivered the first of two devastating medical opinions that their only option was to amputate both his legs.
“I was in shock. I was like ‘What do you mean?’ So they gave the example of Oscar Pistorius who had fibia hemimelia (a congenital absence of the fibula bone in his two lower legs that resulted in him having both legs amputated below the knee). But Mnqobi has the fibula bones, they are just bent. And a part of me was saying, ‘You’re going to cut his leg, and his foot and his toes? But it’s all there!’ And they just said, ‘No, we have to amputate,’ ” the mother recounted.
The first-time parents refused to accept this prognosis and sought a second and third opinion. The second opinion confirmed the first, but their third consultation – about four months after the twins were born – with orthopaedic surgeon Dr Mark Eltringham gave them their first glimmer of hope.
“He told us that in SA he wasn’t aware of anyone who performed the kind of surgery Mnqobi would need. However, he did know of one world-renowned surgeon, Dr Dror Paley in Florida, USA, who had patients from all over the world similar to Mnqobi whom he had treated successfully.”
After doing their own research on the famed doctor – who had also appeared on the Oprah Winfrey show, which affirmed to Nthabiseng that he could “perform miracles” – the couple reached out to him, sending him their son’s scans and X-rays.
Letters from doctors Eltringham and Paley confirmed Mnqobi’s condition. Dr Paley’s letter served as a motivation for the couple’s request to their medical aid to fund the proposed treatment.
In the letter dated earlier this year, Paley stated: “I have had the opportunity to examine Mnqobi Nhlanhla’s radiographs and they confirm that he has bilateral tibial hemimelia. The Paley institute has the largest experience worldwide in treating this condition. I previously successfully treated a patient from South Africa with tibial hemimelia. Mnqobi’s bilateral tibial hemimelia can be successfully reconstructed using the methods that I have developed. The procedures to reconstruct Mnqobi’s legs are very complex and will need to be performed in the USA.
“I have no doubt that if Mnqobi is able to undergo the procedures necessary to reconstruct his limbs he will be able to walk, run, jump and play sports with the other children in his peer group.”
The only snag is that the treatment costs $200 000, or approximately R2.8 million. That excludes the costs of living in the US for a year, which is necessary for the entire treatment process to be completed.
Mnqobi has to have the operation when he is 18 months old, when his kneecaps are stronger.
The hope of their son being able to walk has spurred the Nhlanhlas into becoming fundraising campaign drivers for their son’s treatment.
They are also ambassadors for other families who were given the same diagnosis, but opted for amputation because the challenges to raising the required funds seemed insurmountable.
Mnqobi’s parents have so far been able to raise almost R1.2 million towards the treatment.
Among their fundraising efforts is a Facebook group called Helpqwalk they launched on Mother’s Day.
“This month I received a donation of R5 000. Donors are people I know – I am telling everyone. We started the campaign with just our friends and family.”
The family also got help from Good Samaritans like Justin Kramer, whose family they met through Baby Bright Stars, a daycare centre for babies.
Kramer and his BackaBuddy team competed in an ultramarathon earlier this year, raising R160 000.
Kramer will also be climbing Mount Kilimanjaro in October to raise awareness of Mnqobi’s case.
The couple hosted a gala event where they auctioned various items and sold raffle tickets, raising about R38 000.
Their medical aid will be contributing R500 000 towards benefit cover for the surgery.
However, there is still a long way to go.
What strengthens their resolve to keep going is seeing the success of other patients from the institute.
Asked what had scared her most about the prospect of her child never being able to walk, Nthabiseng said: “That he would live alongside his twin brother and they wouldn’t be the ‘same’... and that he would ask me one day: ‘Why are my legs not like his?’ and I wouldn’t be able to answer him. Especially since I knew there was an option to save his legs. Dr Paley and Dr Eltringham told us it could happen.
“It just costs a lot of money. How do I then say no?
“If everyone had said to me ‘amputate, amputate’, at some point we would have had to accept that. But now here are two globally renowned doctors who actually know each other and can attest to this thing working – how do I as a mother take that away from my son?”
The Nhlanhlas have 11 months left to raise the outstanding R1.683 million needed for the surgery.
What else can the Nhlanhlas do to raise the outstanding funds for Mnqobi’s operation?
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