Three generations of clubfoot care, one outcome
By Aisha Mballo
I’ve had the honor and privilege of traveling throughout Senegal to talk with some incredible kids and their families who have welcomed me into their home and shared their stories with me. The difference between their stories and mine is that today, unlike when I was a child, treatment for clubfoot is available, it’s just a matter of finding it.
Less than two decades ago, access to clubfoot treatment was nearly nonexistent for children in middle- and low-income countries like Senegal. I was among the many children whose parents went searching in vain for care. My mother, hopping from one crowded bus to another with little me strapped on her back, dodging shoulders and swinging arms trying to stand firm, was on a quest to find treatment for my bilateral clubfoot. It was a journey that would, in the end, take 16 years and ultimately involve me leaving home and everything I’d ever known to travel thousands of miles across the world to America. Yet, despite the tenacity it took for me to find care, my story was the exception. Even today, two million children are living with untreated clubfoot. Some are still searching, hopping from one crowded bus to another, looking for hope.
Anne Marie: Finding care as a teen today
Anne Marie, now 18, is a not a typical teenager. She’s sweet, polite, a little shy, but a brilliant young lady who was robbed of the typical teenage experience because of her clubfoot.
On the day Anne Marie was born, what should have been an incredibly joyful day turned tragic with four powerful words: your child has clubfoot. Baffled by this news from the midwife, Germaine, Anne Marie’s mother, dared not speculate about what kind of future awaited her little girl.
“For her to grow up, a young lady with a handicap…it would be devastating,” she recalls. Her father, Joseph adds, “I knew it would be difficult for her to live a full life and have a career. [Those with disabilities] are not widely accepted in our culture.”
“We had to do everything in our power to find treatment,” concluded Germaine.
Anne Marie’s treatment journey started at four months old with a visit to Dantec (one of the large hospitals in Dakar). Unfortunately, she was not seen the first time she went to the clinic as there were too many patients and only one doctor. Thus began a chain of disappointing events: whenever she visited the clinic, she was sometimes seen, but more often wasn’t. Sometimes she’d have a quick evaluation or x-rays, then was sent on her way.
“We were getting up between 3 and 4 am for every appointment,” said Joseph. “And often we had to be at the hospitals at 6 am or before to get in line, get a number, and hope to be seen that day.”
This was exhausting, discouraging, and financially draining for the family. When at last they had a successful appointment, Joseph and Germaine were informed that surgery would cost 140,000 CFA (about $250 USD) instead of the initial 40,000 CFA they anticipated. “I can’t afford that,” Joseph told the doctor.
Eventually Anne Marie was referred to another hospital where she had to start the whole process over again. Sadly, the family was once again met with the same disappointing and shocking hospitalizations cost, only this time the cost was double, 240,000F.
“We lost hope,” said Joseph. “We went home and stopped going to appointments and stopped pursuing treatment. We were better off just waiting for God to give us a sign.”
Anne Marie’s handicap began to negatively impact her more and more, not only physically but also socially. A teenager now, she couldn’t wear regular shoes, she wore long dresses to hide her feet and was embarrassed around her friends and others.
“I just wanted to wear cute shoes and outfits and do the same things my friends did, but I couldn’t…’’ she remembers. “I would sit in my room and just pray and pray.”
As Anne Marie got older, she fell victim to bullying and frequently got into fights trying to defend herself and her condition. Germaine was also subject to stigma and social consequences. “People have said all kinds of awful things to me,” she remembers.
With faith and hope, dreams come true
A sign of hope came one day last year outside Anne Marie’s school when a stranger recognized her clubfoot and referred her to a clinic not far from her house. After a 17-year quest for care, hope was just a few kilometers from home, much closer than the long trek at dawn to Dakar, and far less costly. After a little convincing, Joseph finally agreed to give it another try.
In the summer of 2021, shortly after being dropped off at 5 am at the doorsteps of the Yeumbeul clinic for her first set of casts, Anne Marie’s life finally began to move in a different direction. After 17 years of waiting and false starts she was actually receiving the treatment she’d been looking for. Today Anne Marie is walking on two beautiful, straight feet and has transformed from a shy girl into a confident social butterfly.
“I can now go out with friends and do the same things they are doing. And it’s easier to make new friends. Really, anything my peers can do, I can do too.”
Anne Marie is also more confident in her physical appearance and even presented recently to a room of more than 50 healthcare workers during a World Clubfoot Day event at the Yeumbeul Clinic. She shared with them a moving account of her clubfoot journey and all that she’d been through leading up to that day. Her presentation was met with applause—and tears of joy.
Anne Marie is an excellent student and her dream is to become a lawyer. She and her parents are beyond grateful to the clinic and the incredible work of the staff there. “She can do everything and be anything she wants,” says Joseph. “The future is in her hands now.”
Treatment today for young Gilbert
Gilbert, almost two, was born with clubfoot in the Dakar suburb of Guediawaye. His mother, Madeline, enrolled him in treatment at six months old after receiving a referral to a hospital outside of Dakar. After several visits and a doctor’s order for Gilbert to wait a few years until he was “strong enough to undergo surgery” Madeline sought a second opinion. And it’s fortunate that she did because the sooner a child begins treatment with the Ponseti method the better. In fact, in places with advanced health systems children typical begin treatment at just a few days old. In the spring of 2021 little Gilbert started treatment at Yeumbeul clinic. Less than a year later, his foot was completely straightened and his mother says that sometimes she can’t even tell which foot had the deformity.
Gilbert will grow up never knowing the pain and stigma of untreated clubfoot. He’ll join in games and sports with his friends, attend school, and enjoy all the world has to offer. His future is bright as the stars in the sky, and full of possibilities.
Three generations of care, one outcome
The time I spent with these children showed me how amazing they are. As we sat side by side comparing our treated feet, little Gilbert’s foot next to Anne Marie’s and mine, our feet look more alike than different. There’s evidence of the transformations if you look closely, but even though our journeys were vastly different, the outcomes are surprisingly similar.
Standing next to these two in a clubfoot ward as if I’m still undergoing treatment, I would not change anything about my journey. It has led me here and allowed me to encounter these incredibly brave souls.