Arie R.

RMHC cleft clinic offers comprehensive support, reassurance to young Brighton family

For most expectant couples, the 20-week ultrasound is an exciting milestone—not only is it the traditional “halfway point” of the pregnancy, it also is sometimes called a “gender reveal visit” as many parents learn the expected gender of their baby and can begin to decorate and shop for their baby boy or girl. But, for young Brighton, CO couple Helen and Matt, their 20-week ultrasound visit took an unexpected turn. “At our 20-week anatomy scan, we were unexpectedly sent to maternal fetal medicine [MFM] – they said they saw that our baby boy was going to have a cleft,” Helen recalls. The news was surprising: the scan revealed a bilateral cleft lip and palate and the more detailed imaging at the specialist’s office confirmed it. “They also did an amniocentesis at MFM and found that there was nothing else genetically abnormal,” Helen adds.

Cleft lip and cleft palate are congenital abnormalities affecting the lip and roof of the mouth that occur in the first 6 weeks of fetal development, before most mothers even know they are pregnant. These conditions can occur separately or together. Helen and Matt’s baby had both: the baby’s lip and roof of the mouth both did not fuse together as expected during development.

For the remainder of the pregnancy, Helen and Matt prepared as best they could by meeting with a number of surgeons, a geneticist, and cleft teams to get the best possible care. They called ahead to the hospital where they would deliver to be sure the team there was equipped to handle the arrival of a baby with a cleft. They were assured that, despite it not being a specialized facility, the delivery team would be ready. When baby Arie arrived, however, Helen discovered that his condition was uncommon enough that things didn’t go as smoothly as they had hoped.

Baby Arie was placed on a feeding tube and cared for in the hospital’s neonatal intensive care unit (NICU). During his short stay and despite his medical team’s efforts, Arie had trouble adapting to bottle feeding.  That’s when Helen called Sarah Sogan, a speech language pathologist and member of the Rocky Mountain Cleft Palate and Craniofacial Center at Rocky Mountain Hospital for Children. Helen had connected with the clinic prior to Arie’s birth and gave the team a call when the feeding difficulty arose. “He was in the NICU only because we were trying to figure out how to feed him,” Helen explains. “When Sarah came to consult, she took one look at him and knew what bottle he needed to be using.   From that point on, it was a lot easier.”

With feeding figured out, Arie was discharged. But, just under three months later, he had his first surgery to repair his cleft. “The first surgery was to have his lip repaired. He had a bilateral cleft lip and palate, so the cleft was on both sides,” Helen explains. “At that point, they eliminated the cleft lip, but they didn’t touch the palate.  They wanted it to grow a little more.” After the surgery, he continued to use the bottle Sarah recommended.  The nipple works like a one-way valve: it fills up with milk, which is squirted into his mouth and swallowed.  No suction is required. “Then, at about 10 to 12 months old, the surgeons closed the roof of his mouth.”  Although more surgery will be required, it can’t be performed until he gets a little older.

Today, Arie is five years old and has been followed for the past two years by the cleft clinic at Rocky Mountain Cleft Palate and Craniofacial Center. Arie and his parents meet with this team annually.  Helen says the schedule has helped her family stay on top of issues and plan for the future. The multidisciplinary cleft team collaborates to streamline the family’s visits and Arie’s care plan to make the process as seamless as possible.

Helen explains, “There’s a team of doctors—ENT, audiology, orthodontics, oral surgeon, plastic surgeon, speech therapy, dentist—and they all come in to see us during a one-day visit. We come into the clinic at the hospital for about four hours and just discuss any concerns and work on a plan going forward. Right now, the main issue has been speech, but later he will need other surgeries – like a bone graft, orthodontics, palate expansion, braces. There are windows of opportunities to do these things and they help us know when we can plan them to be most successful.” While Arie spends much of his time at the clinic building with Legos and enjoying snacks, Helen and Matt consider the visit essential to their efforts to keep his care on track.

“The team has been so great, and they have so many resources to help us,” Helen continues, whether it’s dentists they recommend in our area or even help with school. Arie receives speech support at school and Sarah has been able to do phone calls with the school’s therapists to give them tips on what to look for and help with.”

While his team continues to support his care, Arie and his family (now with little brothers ages three and 18 months) enjoy active lives—hiking, swimming, visiting new playgrounds. While Helen and Matt know Arie still has a long journey and many surgeries ahead, they say they would do it all over again and wouldn’t change him for the world. They also find encouragement and support in not only the clinic, but in other families going through similar situations. “Facebook groups have been great venues to share tips and experiences.  We met a nurse in the NICU who has a son in his 20s who was born with a cleft.  She has been a source of inspiration. Most of all, she reassures other families in a similar situation ‘just not to worry—the surgeons are wonderful, and the team is great – any issues, anything, they are there for you. Just don’t worry. They have got you’.”