Silvia Pereira was pregnant for the first time in 1986 when a routine ultrasound revealed that she was carrying a baby girl with a cleft lip. In her early twenties and newly emigrated from Honduras, Silvia decided to keep the condition a secret because she was unsure of how her family would react. “I didn’t even know what a cleft lip was; I didn’t care how she came out; I just wanted my baby.”
When baby Vivian arrived, her husband Dennis was in disbelief: “If you’ve never seen a cleft lip, it’s pretty shocking. I asked myself, what’s going on? Is this my fault, is it my genes?”
Twenty-eight years later, Vivian reflects on her birth story: “Luck was never on my side. My first obstacle in life was being born.” …
When Rick and Aimee Bellew learned that their second child Brooks would be born with a cleft lip and soft palate, they weren’t sure what to expect. So like most people looking for information, they took their questions to the Internet—which turned out to be a mistake.
“Just minutes into our first cleft lip search on Google and we were already devastated,” Aimee remembers. “The pictures staring back at us from the computer screen were so severe. We thought ‘there’s no way a child with a condition this serious looking can be otherwise healthy.’ It was very overwhelming.”
In the coming weeks, they met with doctors and specialists for further testing, and everything indicated that—aside from Brooks’s cleft—he was developing like any other healthy baby. And while the Bellews’ local care team gave them good news, they didn’t have the information on cleft lip repair that the family was looking for. …
Our daughter Casey was born on August 13, 1996, weighing 8 pounds and 13 .5 ounces and measuring 22 inches long. It was a smooth delivery, but soon after birth the doctors noticed “something different” about her. In an instant, what was supposed to be a joyous occasion turned into a dark, scary moment.
It was soon discovered that Casey had unilateral craniosynostosis, a condition in which the fibrous joints between the plates of the skull fuse too early during a development. From that day forward I was told I would need to get used to having a daughter with disabilities and limitations. People said I should prepare myself for disappointment and that mothering a “different” child was no walk in the park. I was shocked, confused and scared. My baby had a birth defect that I had never heard of. I spent many nights wondering why this happened and what was I supposed to do?
It’s been hard, but we haven’t had to do it alone. Since she was born Casey has had many doctors, but her two favorites are the one’s at Children’s Hospital Boston. Over the years Dr. Mulliken, co-director of Children’s Vascular Anomalies Center and Dr. Mark Proctor, her neurosurgeon, have been great sources of support for our family. Without their help I can’t imagine where Casey would be today. …
The National Geographic Channel’s multi-part documentary, Extraordinary Humans, examines different rare medical conditions, including extreme blood and bone abnormalities. Two Children’s Hospital Boston patients will be featured in the episode,Rare Anatomy: Blood, airing Monday, March 22 at 9 p.m.
Son Pham was brought to Children’s from Vietnam to get treated for an extensive venous malformation on the left side of his face. He was cared for by an interdisciplinary team of specialists from the Children’s Vascular Anomalies Center, including John Mulliken, MD and Ahmad Alomari, MD – who were interviewed for this documentary.