Mother speaks out about her son's facial surgery journey

2018-03-21 12:37
PHOTO: Misha Jordaan

PHOTO: Misha Jordaan

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It took a chance meeting on a busy street in Lagos, Nigeria, to change the life of a little boy.

Nancy Ikeokwu (29) was walking with her son, Somto, when a woman approached her with information that sounded like the answer to her prayers. Her child was also born with the condition that afflicted Nancy’s then 15-month-old son, Joy Bassey (36) told her.

But there was a chance Somto could be helped: her daughter, Akikere-Abasi (8), had had surgery in 2015 sponsored by the World Craniofacial Foundation (WCF) and had been given a new lease on life. What’s more, the surgery had been done by one of Africa’s finest reconstruction surgeons: Professor Frank Graewe, one of the doctors who gained international fame in 2014 when he performed the world’s first successful penile transplant on a man who’d lost his penis after a botched circumcision.

Akikere-Abasi was well on her way to looking like a “normal” child, Joy told Nancy then gave her the contact details for the WCF. Maybe they could help her too, she told the upset mom. They could – and they did. Barely a month after Nancy contacted the foundation she was told she and her little boy would be flown to Cape Town for surgery. “I couldn’t believe my ears,” Nancy says. “I screamed at the top of my voice, ‘Oh God, you are an amazing God’.”

We meet the little boy, his relieved mom and Professor Graewe at Cape Town’s Mediclinic Louis Leipoldt Hospital after his successful surgery.

Somto is in high spirits, jumping on his bed and laughing with his mom, clearly not bothered by the brace attached to his head. The contraption will help shift his facial bones forward until he looks like any other kid. It will also relieve the symptoms that could have killed him.

Somto was born with Crouzon syndrome, a condition that stops the bones in the skull from growing normally and causes the face and head to become disfigured if left untreated, the disorder results in patients suffering from sleep apnoea – a potentially life-threatening condition where breathing is frequently interrupted during sleep.

Crouzon syndrome also causes vision problems, dental deformities and hearing loss. The abnormal growth of the facial bones results in a beaked nose and wide-set, bulging eyes that don’t point in the same direction.

Nancy, who worked as a shop assistant in Lagos, and her husband, Patrick, a mechanic, had no idea their son had the condition until he was born. Their older daughter, Precious (6), doesn’t have the condition. “To say I was devastated when doctors told me our son was sick would be an understatement,” Nancy tells us.

“My heart bled for my baby when doctors broke the news. I feared the worst.” She knew she and her husband wouldn’t be able to afford surgery and in any case, there weren’t surgeons in Nigeria qualified to perform the specialised procedure.

Then she bumped into Joy and the rest, Nancy is happy to say, is history. The WCF is a non-profit organisation that provides access to surgical care for children and adults with abnormalities of the head and face. And Professor Graewe is one of the surgeons they turn to when they have a patient whose life can be turned around thanks to his skill and knowledge.

 He performed the operation on Somto on 23 June 2017, assisted by Professor Jean Morkel, academic head of the maxillofacial and oral surgery, anaesthesiology and sedation department at the University of the Western Cape.

Professors Gaewe and Morkel have performed about a dozen surgeries on kids with Crouzon syndrome. The operation should be done before patients are two years old as bones become harder to cut as children grow older, Professor Graewe says. During Somto’s surgery, his face was opened and the bone of his upper jaw and cheekbones and the lower part of his eye socket were detached from the base of his skull.

The bones were moved forward and positioned with plates, screws and bone grafts. His bones will slowly shift forward with the aid of special “distraction devices,” Professor Graewe explains. In other words, the brace on his head will aid the process of bone correction. The good news is the little boy should need no further surgery and will be able to have follow-up care in Nigeria. Somto’s operation took just 90 minutes but it was the longest hour and a half of his mom’s life. “The doctors had assured me that everything would be okay, but I still had my fears,” she says. “When they called me in after 90 minutes I was overjoyed when I saw my boy was doing fine.”

She immediately phoned Patrick, who was back home in Nigeria with their daughter. “He was over the moon too. All my family kept phoning to check if everything had gone well. The whole family is relieved now,” she says. There was a big celebration when Nancy returne to Nigeria with Somto.

She is now looking forward to living life normally, without having sleepless nights worrying about him. “I have been to hell and back in the past 15 months. As a mother you wish you can take the pain on your child’s behalf. But now all the pain and suffering are gone.

“I will forever be grateful to the team.” Nancy won’t be returning to work –Somto will be her priority.

“I want to give him my undivided attention. Perhaps when he is older I can start working again. But my husband has said he will take care of the finances so I can look after our son,” she says.

This story was previously published in DRUM magazine.

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