Everything about Sami’s pregnancy had gone smoothly, so when her second daughter was born, the delivery room doctor’s reaction was frightening.
“The doctor held her out and said ‘oh no,’” Sami recalled. Her baby, Shiloh, had a small hole in the middle of her neck.
Doctors at the hospital outside Sami’s Atlanta home immediately began running tests on the baby girl’s heart, thyroid and other organs. The tests revealed no major issues. To Sami’s great relief, her baby could nurse right away and eat without problems. The family went home with no answers about the hole.
“We left the hospital knowing nothing,” Sami said. “They said they had never seen this and had no clue what it was.”
The family continued to search for information. After scouring the internet, Sami’s brother found a photo of another child who had a hole like Shiloh’s, along with information about the rare condition: congenital midline cervical cleft, or CMCC.
CMCC occurs when a baby’s neck fails to form properly before birth. It is a cosmetic issue similar to cleft lip and cleft palate, but instead of the face, it appears in the center of the neck. Internally, the body creates a fibrous cord that needs to be removed surgically. It affects about 1 in every 100,000 births each year.
In researching CMCC, Sami found a Facebook group for families with children with the same diagnosis. The name of a surgeon with expertise on correcting CMCC kept coming up: Dr. John Maddalozzo at Ann & Robert H. Lurie Children’s Hospital of Chicago.
Dr. Maddalozzo is an expert on head and neck masses in children. He is also a professor of otolaryngology/head and neck surgery at the Northwestern University Feinberg School of Medicine and his research in the field has been published widely.
Sami said she initially felt “silly” considering flying all the way to Chicago for surgery. But then she discovered that few doctors in her area had ever heard of it or performed the procedure. When she talked with other families about their CMCC experiences, she knew the trip was the right thing to do for her family.
“After talking with three or four moms who told me that, without a doubt, we should take her to Chicago to Dr. Maddalozzo because he is the best, we knew we had to go,” Sami said. “We saw ear, nose and throat doctors in Atlanta who offered to do the surgery, but we wanted experience. I haven’t heard of any other doctor who has done the amount of surgeries on CMCC patients that Dr. Maddalozzo has.”
Shiloh’s surgery in 2018 took about two hours. Dr. Maddalozzo was able to remove the internal cord, close the defect on her neck and restore her neck’s contour. In closing the hole, he left a scar in the shape of a double “Z” that will become less visible as Shiloh gets older.
It worked well. Now, more than a year after the surgery, Shiloh’s “Z” scars are barely noticeable, her mom said. The smiley and outgoing almost-2-year-old old loves swimming, puppies, popsicles and her big sister, Oaklee.
Her follow-up appointments occur closer to their Atlanta home, but the family stays in touch with Dr. Maddalozzo. He even flew to Alabama recently to speak with about a dozen families who have been affected by CMCC, including Shiloh’s family, at their annual meeting.
“Dr. Maddalozzo truly cares. He still follows up to check on Shiloh,” Sami said. “I would recommend anyone to Lurie Children’s and Dr. Maddalozzo.”