When 4-year-old Lovelia came to CHoR last summer, she couldn’t walk or eat solid foods. Just a few months later, she returned to her home country of Belize doing both of those things and more!
Lovelia was born with Apert syndrome, a genetic condition characterized by malformations of the skull, face and limbs. This includes a condition called syndactyly, where all the fingers and toes are fused together. She also had a cleft palate, an opening in the roof of the mouth, which made eating a challenge.
Most babies born with a cleft palate in the U.S. have surgery to repair it when they’re between 6 and 12 months old. This isn’t the case in Belize, where much of the population lives in rural areas without easy access to the country’s few hospitals.
“When she was born I didn’t know what to do. I thought it was only outside – I didn’t know she had a cleft palate – and I thought ‘I can manage,’” said Lovelia’s mom, Bernadina. “But when they told me she had a cleft palate and I couldn’t breastfeed her, I started to wonder: Will my baby survive? How will she live?”
When one of Lovelia’s doctors recommended her to World Pediatric Project, everything changed. WPP brings pediatric specialty care to countries in the Caribbean and Central America where kids otherwise wouldn’t have access to surgery and other advanced medical care – at no cost to the families thanks to people’s generous donations of time, expertise and funds. Several CHoR doctors travel as part of WPP teams to provide this life-saving and life-changing care to children in their home countries.
In some cases, such as Lovelia’s, the complexity of the conditions requires families coming to the U.S. for coordinated care.
Lovelia underwent a series of coordinated surgeries by craniofacial surgeon Dr. Jennifer Rhodes, neurosurgeon Dr. Gary Tye and ENT Dr. Raj Petersson. The first surgery was performed to relieve the pressure on Lovelia’s brain and safely allow space for future growth and development. Then, she had surgeries in two stages to separate her fingers and toes, followed by the operation to repair her cleft palate. The final surgery was to remove her tonsils.
Bernadina describes Lovelia’s reaction to seeing her hands following surgery. “She even cried! She didn’t know what to think about her fingers!”
Shortly after her surgeries, Lovelia took her first steps – a huge milestone for both Lovelia and Mom.
“Back in Belize, everybody would ask me, ‘How old is your baby?’ I would tell them she is 4. They would say, ‘Oh aren’t you tired of taking care of her and packing her everywhere you go?’ She’s my baby. I take her everywhere I go. I will not leave her. If I go to town, she goes with me,” added Bernadina. “I see her walking and I posted it and everybody, they are shocked! I had always had hopes that one day she would walk.”
The moment was powerful for Lovelia’s care team too.
“Seeing the profound joy on her mother's face when Lovelia took her first steps was one of those moments that makes all the years of training and sacrifice worth it,” said Dr. Rhodes. “There is no greater joy than watching a child overcome a challenge en route to achieving their full potential – just the possibility of contributing to that journey is what gets everyone at CHoR up in the morning. WPP shares that philosophy which is why the bond is so strong between our organizations.”
Lovelia and her mom stayed in Richmond for four months so Lovelia could get the follow-up care she needed and her doctors could ensure she was healing and progressing well. Mom got plenty of care as well, with warm meals and camaraderie from the teams at WPP and The Doorways.
Though thankful for the outstanding care, Bernadina and her daughter were eager to get back home. Lovelia has two siblings – ages 6 and 7 – and Bernadina wanted desperately to hug them and get them back on track with their schooling. She’s very proud of their superb grades.
Now, Lovelia will be ready to start school when her turn comes too. In addition to walking, she has started talking and can hold a pencil, a crucial skill that wasn’t possible before surgery.
“Looking at her now, I am the happiest mother. Thank you WPP, thank you CHoR, thanks to the donors and thanks to The Doorways for giving us a home here during our stay,” added Bernadina.
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