Stories about: Cleft and Craniofacial Center

Families with Apert syndrome find similarities, not differences

Apert syndrome
Madilynn and her father Rocky

For some families in the waiting room on the day of the Apert syndrome clinic, it’s a reunion. For others, it’s a revelation. Coming to Boston Children’s Hospital from as far away as China, some have never met another child with Apert syndrome. Before long, parents and kids of all ages and ethnicities are taking group selfies as the younger children run around and play.

“These kids have the brightest smiles, they’re very resilient,” says Tambra Milot, mother of 3-year-old Madilynn.

Each year, the clinic sees about 50 children with Apert syndrome, a rare genetic disorder in which the skull, face, hands and feet develop abnormally. The clinic is held at least twice a month, bringing together the specialists each child needs to see. Today, families are also here for the weekend, to exchange information and learn about the latest research at Boston Children’s 2016 Apert Family Symposium.

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Kailyn’s smiles, Kailyn’s strength

newborn-cleft-lip
Photo credit: Samantha K Photography

On April 1, 2012, my husband Kevin and I found out we were expecting our second baby. We were very surprised as our daughter Kendall was just seven months old at the time. At the same time, we were very excited we would have two kids so close in age.

At our 20-week ultrasound, we had another surprise — this baby had a cleft lip.

We were pretty upset when we left the ultrasound. We couldn’t stop asking, “Why us? What did we do wrong?”

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Jack’s journey managing Robin sequence

Pierre Robin Sequence, Jack Ryan
Jennifer and 8-week-old Jack

Jennifer Ryan is a disability expert. She started her career doing home visits with drug-addicted and abused babies, then ran a center and started a program for kids with autism and now works in a collaborative elementary school.

But nothing prepared this new mom for the challenges she would face with her own child.

“It’s completely different when it’s your own,” she says now, after her son Jack was treated at Boston Children’s Hospital’s Cleft and Craniofacial Center for a group of birth defects known as Pierre Robin sequence or just Robin sequence.

For the first and second trimesters of Jennifer’s pregnancy, everything looked perfect. At 30 weeks, a blood clot put Jennifer in the hospital and her pregnancy at risk. As a standard precaution for any high-risk pregnancy, more ultrasounds and tests were ordered. Doctors were concerned about one of the scans, so Jennifer was sent to Boston Children’s for an MRI.

That’s when things got complicated.

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A second chance for Bentley and his encephalocele

Bentley Yoder encephaloceleSierra Yoder was having a normal pregnancy, but the 20-week prenatal ultrasound seemed to tell another story. The Yoders learned that their child — a boy to be named Bentley — had something called an encephalocele. Brain tissue was bulging out of an abnormal opening in his skull, unprotected by bone.

“They said he had zero chance of survival — ‘incompatible with life,’ they told us,” recalls Sierra. “I specifically remember asking is there any chance he could survive? They said no, that in the best-case scenario, he’s going to be a vegetable. They made it out like I was going to lose him at any point.”

With that knowledge, the Yoders decided to end the pregnancy. But at the 11th hour, Sierra changed her mind. It didn’t feel right — Bentley was moving and kicking and had a strong heartbeat.

So they kept going.

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