Learning that your baby has a cleft lip or palate can be upsetting, but these birth defects are quite common. They occur early in pregnancy when tissue from each side of the head grows together to form the face. If these tissues don’t completely join, the result is a cleft, or gap, on one or both sides of the upper lip. A cleft palate occurs when the tissue that forms the roof of the mouth doesn’t fully come together, leaving an opening between the mouth and nose. …
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. …
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?” …
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.