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.
“We were grateful to learn that Brooks’s problem was largely cosmetic, but at the same time the doctors we were seeing couldn’t discuss long-term treatment plans with us in the detail we wanted,” Rick says. “Knowing your newborn will need multiple operations is scary. You want to know as much as you can, and we simply weren’t getting enough information at that point.”
Worried, Aimee went to a friend who works as an obstetrician and asked for help in understanding Brooks’s diagnosis and treatment options. “Looking back, it was a pretty short conversation,” Aimee says. “She said, ’When we find out a child will be born with a cleft or birth defect requiring specialized care, we send them to the Advanced Fetal Care Center at Boston Children’s Hospital.’”
After considering their options, the Bellews transferred their care to Brigham and Women’s Hospital—which has a close connection with Boston Children’s—because they felt it was their unborn baby’s best chance at receiving the care they wanted for him.
On her very first call to the Advanced Fetal Care Center (AFCC), Aimee says she felt more support than she had since learning about Brooks’s cleft, all thanks to Donna Morash. “Donna listened to our story, said she could book an appointment for us the following day and talked me through everything that was going to happen,” Aimee says. “In just one phone call, I leaned more about cleft lip and its treatment than I had in the past 20 weeks. It was such a relief.”
At the appointment, a new fetal MRI was taken to make sure that Brooks’s previous diagnosis was accurate. Aimee and Rick were then introduced to their son’s surgeon-to-be John Mulliken, MD who has been treating kids like Brooks for decades at Boston Children’s Cleft Lip and Palate Program.
“Dr. Mulliken looked over all of Brooks’s images, new and old, and told us not to worry. He was the first medical professional we spoke to who not only explained very clearly what Brooks was up against, but that it was all very treatable,” Rick says. “News like that from a man with Dr. Mulliken’s reputation and experience was the best thing we could have asked for.”
A few months later, Brooks was delivered at Brigham and Women’s, and just a few hours later, a member of Boston Children’s Cleft Lip and Palate Program was visiting Aimee’s hospital room to teach her how to use a Haberman feeder. (Because of their condition, babies with clefts often require special bottles to support their sucking abilities until their treatment is complete.)
The following week, the Bellews were discharged with instructions on how to care for Brooks in the coming weeks, and the dates for his eventual three operations were already lined up. “It was so reassuring to know that they had all the details taken care of, so we could focus on other things,” Aimee says. “At that point, all we needed to do was love our new son and show up for his treatment at the appropriate time. They took care of the rest.”
“Surgery for what?”
Today Brooks has undergone two out of his three procedures, and is looking and feeling great. In fact, aside from a small hole in his palate that will be addressed in his next operation, Rick and Aimee say Brooks looks and acts just like his older sister Tess.
And it’s not just Brooks’s doting parents who are impressed with his treatment. The Bellews recently showed pictures of their family to friends, and when they mentioned that Brooks was healing from repairs in a few of the images, no one could figure out what they were talking about.
“They looked at the picture and said, ‘he just had surgery? For what?’” Aimee says with a slight laugh. “If you had told me six months ago, after I first Googled “cleft lip,” that I’d one day have to convince people our child was born with a cleft, even before his treatment was finished, I wouldn’t have believed you.”
To speak with a member of our team, or learn more about the services we offer, please visit the website for Cleft Lip and Palate Program.
For more information on the Advanced Fetal Care Center, visit their website.