Cleft Lip and Palate Babies Benefit at URMC/Eastman Dental Center

Lindsay Ebbrecht, 27, learned at an ultrasound appointment during her 16th week of pregnancy that her baby had a cleft lip and palate.

Sierra’s mother, Lindsay Ebbrecht, drives 2 hours each week to Eastman Dental Center to have her NAM adjusted by pediatric dentist Dr. Karp and resident Dr. Avani Patel.

“I was in shock for a week or so, and a little nervous, because sometimes cleft lip and palate is associated with another syndrome,” she said. “I was so relieved when I found out Sierra didn’t have any other conditions; I knew cleft lip and palate was a fixable situation.”

Thus, she began what she refers to as her second career, spending every night after work on the computer learning all about cleft lip and palate and the various options for treatment. She read every medical article she could find as well as websites and blogs from other parents who were already on the journey she was about to begin.

Once she had all the facts and information, she had no doubt she wanted Sierra to wear a NAM, or a nasoalveolar molding appliance. The NAM is a retainer of sorts that fits into the baby’s mouth and later her nose to gradually reduce the size of the gap before the first corrective surgery, which occurs anytime after baby reaches 10 pounds. The team from Golisano Cleft and Craniofacial Center at the University of Rochester Medical Center, including Eastman Dental Center, is the only group in the area who performs this molding technique.

When Sierra was just 10 days old, she had an impression of her mouth and nose and began treatment shortly thereafter.

Since then, Lindsay has driven two hours from her hometown Elmira to Eastman Dental Center every week to have Sierra’s NAM adjusted.

At home, taking care of Sierra and managing her NAM can be labor intensive. As a result, Lindsay quit her job to dedicate her time to caring for Sierra, but she says, it’s well worth the effort.

Sierra’s NAM (see photo above) has helped close the gap more than 13 mm in less than 3 months. Her right nostril, originally flat at birth, is now taking shape.
“Children who use the NAM likely benefit from enhanced feeding as an infant, a much shorter initial surgery at about four months of age, a potential for fewer subsequent surgeries, and significantly less scarring around her surgically repaired lip and nose,” explained Dr. Jeffrey Karp, EDC pediatric dentist and cleft lip and palate expert.

Thanks to this device, baby Sierra’s gap has closed from its original 17mm at birth to 4 mm at 3 months of age. Her right nostril, originally flat at birth, is now taking shape, as well. “Most importantly,” Dr. Karp added, “Lindsay is able to take an active role in improving Sierra’s surgical result”.

Also Featured on R-News

New Dental Procedure Gives Patients Hope

by Casey J. Bortnick
Published Dec 27, 2008

It’s called cleft lip and palate, a condition that affects 1 in 1000 babies.

It occurs when the tissue in the developing mouth and the palate don’t fuse together properly. The condition can lead to serious abnormalities and can only be corrected with surgery. But a relatively new dental procedure can improve surgical results.

“It’s a pain in the butt most days, and she hates it,” said Lindsay Ebbrecht.

Ebbrecht’s three month old daughter, Sierra, was born with cleft lip and plate. “It’s not an ideal situation. No one wants to hear that there’s something wrong,” Ebbrecht said.

When Sierra was born her cleft was 17 millimeters wide. A gap that needed to be closed before she could even be considered for plastic surgery. ”

Cleft lip and palate is certainly treatable,” said Dr. Jeff Karp of the Eastman Dental Center.

Sierra’s mom drives from Elmira to Rochester once a week for treatment.

Dr. Jeff Karp fitted Sierra with nam, a molding fitted for the babies mouth. It works by moving segments of the gum closer together.

“To make the cleft gap less severe, to help to align the nose before surgery, and it really makes the surgical outcome a lot more aesthetic,” Karp said.

In just a short amount of time, Sierra’s nam has reduced her cleft to a few centimeters.

For Sierra and her family, there’s been some sleepless nights along the way.

“But it’s definitely worth it for the long run. Although she doesn’t know it now. She gets really mad,” said Ebbrecht. But there’s still a long way to go. Years of management and follow up surgeries are still ahead.

Sierra’s mom says that shouldn’t be a problem.

“All things considered, shes been quite the little trooper,”.

© 2008 Time Warner Cable Rochester, NY All Rights Reserved

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