A mother's story about her baby's cranial remodeling surgery and Pheiffer Syndrome
Sometimes being strong is your only option as a parent...
Being a parent is no easy feat when you have a healthy family, so we cannot imagine what it feels like when you have a baby that is in need of medical attention on a whole other level.
But in saying that, we know that being a parent is a gift that we have all been blessed with and with that gift comes responsibility. Sometimes we learn more whilst on this journey of parenthood, more than anything else.
A mother shares her personal story about her fourteen-month-old baby who recently underwent remodeling cranial surgery. Maggy Capatti (44), calls her baby girl a "busybody", and we love that she can appreciate those little quirks from her daughter, Luna Buchanan.
"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." (News24)
The severity and presence of certain symptoms may differ with each case, there are different types and these determine coincide with the severity. (Rare Diseases)
"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." (News24)
If untreated, it can cause constant headaches and even problems with vision. Thanks to the Smile Foundation, which is a foundation that "arranges surgeries and treatment for children in need", children like Luna are able to go for elected surgery.
After trying for five years, we fell pregnant just before the pandemic hit. Although we took a knock during that time and the business didn’t work out, my blessing definitely was my pregnancy. The paediatrician was with us in the delivery room and soon after Luna was born he told us he suspected she had Pfeiffer syndrome.
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After finding out that Luna had Pheiffer Syndrome, Maggy and her partner Llewellyn Buchanan, were informed that she would need to go through cranial remodeling surgery, this was advisable to avoid further health issues.
"Luna was then placed on the list for Smile Week, which is coordinated by the Smile Foundation...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." (News24)
It is with great pleasure to know that Luna is recovering wonderfully and keeping her mom on her toes. Luna's story really puts things into perspective for us, as parents, as we are expected to be resilient. But sometimes we need support and guidance too, so don't be afraid to ask for help...
Image Courtesy of Facebook