Then he uttered the word that still rings in her ears: “however.” “Everything went fuzzy,” said Mancuso, 25, of Wyoming.
The unsettling news Mancuso received was her sons, Alfred and Michael, now 7 1/2 months old, would be born with a cleft lip and palate.
Questions and dread raced through her mind as she tried to prepare herself to traverse through unfamiliar prenatal territory.
So, too, did a fierce determination.
Mancuso decided she would do what it took to get the lowdown about this treatable birth defect in which the roof of the baby’s mouth, or palate, does not develop normally during pregnancy, leaving an opening or cleft that may go through to the nasal cavity.
She created an interactive Web site dubbed the Cleft Lip and Palate Foundation of Smiles so parents could network with one another to find solace and solutions to their concerns. Since going online three months ago, the site has garnered 170 members nationwide.
“I respond to about 100 e-mails a day,” said Mancuso, who also is raising 21-month-old Rose Marie with her fiance, Alfred Weimer.
She does not dispense medical advice to parents, but points them to resources and medical professionals who can help, Mancuso said.
An average of 100,000 children are born annually or develop a craniofacial condition, according to the Dallas-based Children’s Craniofacial Association.
Anxious parents’ concerns range from feeding advice, speech therapy recommendations, tips on navigating the sometimes-murky waters of insurance coverage and wondering how much their children’s scars will heal over time following a series of surgeries, Mancuso said.
Hollie DeYoung, of Jenison, found herself charting unfamiliar waters when an ultrasound detected daughter Eastyn would be born with a cleft lip.
The emotions still are fresh in her memory even though surgery corrected the now 4 1/2-year-old Eastyn’s cleft when she was four months old. She may need additional surgery as the scars stretch when she is a teen.
“I was devastated,” said DeYoung, who also has two older children with her husband of eight years, Kevin. “Honestly, I was so scared to go into labor because I didn’t know how I was going to feel about the baby.”
DeYoung said she arrested her fears by conducting research via the Internet and picking her doctor’s brain for knowledge.
Mancuso advises parents to pace themselves since corrective surgery can continue well into a child’s late teens.
“Many families are in the same boat,” Mancuso said.
“Try to take it a day at a time and deal with what you’re dealing with now rather than trying to look 20 years down the road,” she said.
It’s vital to assuage parents’ apprehension, said Dr. Robert Mann, director of Spectrum Health’s Helen DeVos Children’s Hospital oral cleft clinic.
“Parents’ concerns are paramount because we want the parents to bond with the babies,” he said.
“Initially, I would say the parents’ first question is why did this happen? The parents’ first concern is will my baby be normal?
“There are a lot of feelings of guilt. They were expecting the perfect baby and now they’re looking at something they’re not familiar with. It really goes a long way when we come in with a positive attitude as to how well these kids are going to do.”
To help parents and family members, a medical team should be mobilized after the baby is born, which usually includes a pediatric plastic surgeon, speech pathologist, registered nurse and social workers to assess the child’s condition.
Mark Hazel, a 19-year-old Kentwood resident, can’t precisely recount the surgeries he’s endured to correct a unilateral cleft lip and palate.
What he can outline is the emotional sting he endured from the tauntings classmates hurled at him in elementary and middle school.
“Those were very hard years,” said Hazel, a 2007 East Kentwood High School graduate who now attends Grand Rapids Community College. “I was picked on just for being different.”
To his relief, the cutting remarks did abate in high school when he found friends in school and where he works at Holland Hospital’s Raybrook Manor in Grand Rapids as a dietary aide. They saw something more than Hazel’s physical appearance.
“It did wonders for my confidence,” Hazel said. “I found friends who didn’t look at me for my looks but the actual person I am.”
The scars left by cleft palates are usually inconspicuous, but children play close up face-to-face and even small scars can leave them vulnerable to teasing and bullying, Mann said.
That’s why it’s a good idea very early to support the family and teach them how to implement strategies that will enable them and their children to cope in life.
“Once we make a cut or incision, there is always some scar,” Mann said. The goal is to make the scars blend with the natural lines of the face, hiding them as much as possible.”
There is no quick fix to cleft lip and palate, Mann said. Treatments continue from young childhood to young adulthood.
“We take care of the kids for about 20 years,” he said.
The first two years of a child’s life usually includes lip repair and palate surgeries and inserting ear tubes to drain the ear canal.
Orthodontics to align the jaws and straighten teeth starts at age 6 or 7.
Another operation between ages 8 to 10 repairs defects in the gum line.
By the mid-teens, surgery may be necessary on the jaws if they are not lining up in the natural position.
There usually is a nose surgery to straighten the nose and assist in breathing and revisions of the lip scars so that the appearance fits an adult.
“The final piece is dental restoration as these children are usually missing one or more teeth in the cleft area,” Mann said.
Children with cleft palates average about eight surgeries, which tend to be overnight stays as children and outpatient as young adults, Mann added.
Mann said surgical techniques have improved in the past 25 years that make scars less noticeable when they heal. Improvements include dissolving sutures, skin glue, scalpels that are sharper and make cleaner cuts and a better understanding of how to subside scars’ outward show.
“I don’t use the same techniques today that I used 25 years ago,” Mann said. “They’re always changing and evolving. We (surgeons) share ideas on how to make the scar as inconspicuous as possible.”