Her mom keeps a close eye over her as she giggles and waves then tries to stand up on the chair next to her.
“She’s a busybody as you can see,” Maggy Capatti (44) says proudly of her 14-month-old daughter, Luna Buchanan.
But little Luna has been through the ringer since her arrival in the world and when YOU speaks to her mom, the tot is still in recovery from cranial remodelling surgery she had just two weeks ago.
The baby was born with Pfeiffer syndrome, a rare genetic disorder where a baby’s skull bones fuse together early in their development. It can also affect the bones in a child’s hands and feet, which can sometimes prematurely fuse.
In Luna’s case, her skull is flattened at the back and has not grown normally. Her brain is being pushed forward in her skull, affecting the shape of her head and face. She also struggles to use her thumb on each hand and battles to balance on her tiny feet.
“The condition can also sometimes cause increased pressure around the brain,” the Smile Foundation, an organisation that arranges surgeries and treatment for children in need, says in a press release. “If left untreated, Pfeiffer syndrome can cause developmental complications such as raised intra-cranial pressure, causing recurrent headaches and problems with vision.”
Life has been a rollercoaster for Maggy, who is a hairdresser by trade. Before the pandemic struck, she was planning to be her own boss and open a small hair salon with the support of her partner of over 20 years, Llewellyn Buchanan.
But the idea flatlined when lockdown came into effect and Maggy found herself unemployed. She was also pregnant.
“After trying for five years, we fell pregnant just before the pandemic hit,” Maggy tells YOU. “Although we took a knock during that time and the business didn’t work out, my blessing definitely was my pregnancy.”
She had a normal pregnancy, Maggy says, and no complications were detected during her regular check-ups at Tygerberg Hospital in Cape Town.
As her baby’s due date approached, Maggy, who doesn't have medical aid, received financial assistance from a family member and made plans to give birth at Mediclinic Panorama. At 39 weeks, she welcomed Luna via C-section on 31 August 2020.
“Nobody knew a thing about her condition before that,” she says. “The paediatrician was with us in the delivery room and soon after Luna was born he told us he suspected she had Pfeiffer syndrome.”
Giving birth during a pandemic was stressful enough, Maggy says, and to find out the precious baby they'd waited so long for had a rare genetic disorder was heartbreaking.
Maggy and Llewellyn were given a referral letter to visit the genetic testing team at Tygerberg Hospital.
“We had an appointment to meet with the genetic testing team and a specialist,” Maggy says.
Usually, blood tests are done on patients and then sent to the US for examination. But when Luna was just six weeks old, specialists struggled to find veins to draw blood and instead a swab was done on the little girl, which confirmed the doctor’s suspicions of Pfeiffer syndrome.
“They were really helpful and supportive and so, so good with her,” Maggy says.
The couple were told that Luna would need cranial remodelling surgery to avoid further health problems. Luna was then placed on the list for Smile Week, which is coordinated by the Smile Foundation.
“Smile Week is a full working week during which surgeons, their assisting surgical teams, other medical professionals and hospital staff open their hearts and clear their schedules to perform reconstructive surgery on disadvantaged children suffering from facial anomalies and the emotional pain that accompanies these conditions,” the foundation explains.
Luna has managed to meet many of her milestones and can crawl and stand but she needs to wear a hearing aid as the pressure in her head makes it hard for her to hear softer sounds. Surgery would change her life – but the family was forced to play a waiting game as her operation was put on hold because of lockdown.
Then, this year, thanks to sponsors like BigShoe – a worldwide non-profit network that has footballers and sports fans on board – 19 children, including Luna, were selected to undergo life-changing reconstructive surgery. The little girl was wheeled into surgery on 9 November for an eight-hour procedure.
“What makes this procedure so urgent is that, being under the age of two, Luna’s bones are still soft and pliable, which will make them easier to move to create a normal head shape,” Smile shared on social media.
Now, almost three weeks post-op, the bubbly baby has recovered well and keeps her mother on her toes.
Luna now attends occupational therapy and also goes for Chat classes, aimed at helping children hear and talk, at the Carel du Toit Centre at Tygerberg.
“Full-time mommy is my job now,” says Maggy, who shares that activities and special classes with Luna keep her busy.
Maggy also admits that the love and support both her and Llewellyn’s family have shown them, as well as prayers from members of their church, have been a major source of strength for them.
“We are so grateful that Luna had the chance to get this op,” she says, tearing up as she glances at her daughter.
“We just want the best for her and a chance for her to do everyday things with ease.”
EXTRA SOURCES: SMILEFOUNDATIONSA.ORG