Watching his three children play together at Kenner City Park, Ken Gros makes a very good point: “Every kid’s a joy, and every kid’s a challenge.”
Ken and his wife Rachel had three weeks to prepare themselves after a routine ultrasound indicated that their son, Malcolm (now two years), would be born with a cleft lip and palate.
They did their due diligence before choosing the cleft and craniofacial team at Children’s Hospital of New Orleans.
“I tell everybody we checked with all the local hospitals,” Ken says. “We did our research about Children’s, went about getting a second opinion, and saw pictures of what Dr. St. Hilaire had done. He and the whole team really impressed us.”
“At Children’s I feel like I am home,” Rachel says. “I feel like am in the best hands and my children are in the best hands… and I wish I had business cards for Dr. St. Hilaire!
“I would be handing them out.”
Understanding Cleft Lip and Palate
Following the prenatal diagnosis, the Gros family did their research.
They depended on resources available through the Cleft Palate Foundation, and with help from the people at Children’s Hospital of New Orleans they were able to seek out and talk to other families who had been through the same thing.
“I didn’t realize at first, after they made the diagnosis, how much would have to go into taking care of Malcolm,” Ken says.
“They carefully outlined the whole process for us—the typical treatment, the normal timeline, and how they would tailor it to Malcolm’s needs as he grows.”
“I watched some YouTube videos of the surgery to see what our boy was going to have to go through, but it upset Rachel,” Ken confesses.
“She certainly wouldn’t recommend it, but for me it was calming.”
Also calming was the fact that in Louisiana, Medicaid subsidizes care for children born with cleft lip and palate. “That was one of our biggest fears,” Ken confesses, “and knowing that Medicaid would cover what private didn’t gave us the peace of mind to focus on our family.”
Talking to Your Kids About Cleft Lip and Palate
Malcolm is the youngest of three children. His older brother, Kenneth III, understood that Malcolm was special, born with an injury, but otherwise just like any other kid.
“Ken’s been great,” his father says. “It was Peyton who asked the hard questions, like, ‘Why?’”
Daddy Ken Gros had a ready answer for his daughter.
“I was in an accident when I was a child, and you can barely tell now, but I have a small scar on his lip just like Malcolm. I would take his hand and touch mine and then touch his, ‘Daddy’s got scars… Malcolm’s got scars…’”
Of course, Ken and Rachel had asked themselves the same question: why?
Cleft lip and palate is fairly common, occurring in about 1 or 2 of every 1000 babies, and doctors themselves aren’t sure why it occurs with such frequency. It is suspected that certain medicines may increase the risk, and so Rachel is always very careful to warn expecting moms: know what medicines you are taking and do your research on them!
The good news for families in greater New Orleans is that the what and how are more straight forward: cleft lip and palate is a well-understood condition, the treatment guidelines time-tested, and American Cleft Palate-Craniofacial Association has certified two hospital teams right here in New Orleans.
Raising a Child with Cleft Lip and Palate
Raising a child with special needs is a special challenge. Ken admits that it is still a little bit intimidating from time to time, but Dr. St. Hilaire and the cleft and craniofacial team at Children’s Hospital have been there every step of the way.
“They would call us up all the time to see how Malcolm was doing.”
Feeding a child with cleft lip and palate is the first challenge: Malcolm needed to be fed with specially-ordered bottles. (The bottles cost $25 for six—a week’s worth. Alternately, a special, reusable nipple costs $25 and lasts two weeks.) Rachel also makes sure that Malcolm gets high-iron formula, which aids the healing process.
With his surgeries complete (each required an overnight stay at the hospital), the next step is speech therapy, and then for his adult teeth, at which time any dental issues will be addressed.
So far, though, so good:
Daddy Ken beams as he watches his kids on the playground, “We are real proud of Mal.”