Mother and Daughter

Liliana is not a normal child, and she doesn’t want to be. Just ask her.

Lily’s parents, Erica and Zach, learned during a routine 20-week ultrasound that their baby would be born with a cleft lip, and possibly a cleft palate. She was born with both.

A cleft lip — with or without a cleft palate — is the most common craniofacial (head and face) birth abnormality in children. According to the Centers for Disease Control and Prevention, about one in 1,600 babies in the United States is born with both a cleft lip and a cleft palate.

The Journal of Cranio-Maxillofacial Surgery says this abnormality can cause lifelong problems with self esteem and quality of life. Cleft lip and cleft palate are corrected with multiple surgeries. These surgeries can take a toll on children and their families.

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When they learned about the challenges Lily faced, Erica and Zach were determined to find the best team to care for their newborn.

The family could have chosen UPMC Children’s Hospital of Pittsburgh for its convenient location near their home. Instead, it was the hospital’s multidisciplinary Cleft-Craniofacial Center that convinced them to choose UPMC Children’s for Lily’s care.

At the center, each patient is cared for by a group of experienced specialists. Working together, these specialists develop a treatment plan that is unique to each patient.

Lily’s parents were confident that UPMC Children’s would provide the best care for their daughter. The care plan her team developed began with Lily’s first visit to the Cleft-Craniofacial Center — at just three days old.

The first step was to make sure she was breathing and eating properly. The team showed Lily’s parents how to best care for her until surgery.

Since breastfeeding was not possible, Lily’s parents used a customized orthodontic device known as a nasoalveolar molding (NAM) device that would fit over the cleft palate. With the NAM, Lily could use a special bottle to get enough nutrition.

The surgeons repaired Lily’s lip when she was seven months old. At 13 months, they repaired her palate. Later, she had a bone graft. She also had surgery to insert ear tubes during this time.

When Lily was 7 years old, her family moved away from the Pittsburgh area. They now live more than three hours from UPMC Children’s but travel there once a year so that Lily can continue to get the best care possible.

After all, UPMC Children’s is among the best children’s hospitals in the country, ranking 9th on the U.S. News & World Report Honor Roll of Best Children’s Hospitals.

Lily’s family agrees. Erica was most impressed with the surgeons’ skills, which made “such a difference.” Zach says Lily’s pictures tell the full story of how far she has come, calling UPMC a “top-notch organization.” Most of all, they are thankful for the special care the entire cleft-craniofacial team continues to provide for their daughter — and how they’ve made her family feel just as important.

Lily says she likes the doctors at UPMC Children’s because “they tell it to you as it is.” But her smile and bubbly personality tell the real story of Lily’s journey. “The surgeons helped me look beautiful,” she says.

There’s a cream Lily can apply that could help her scars fade, but she doesn’t want to do that. Friends have said they feel bad for Lily and wish for her to simply be normal. “But I’m not, and I like that about myself,” she says with a confident smile.

Interested families can schedule a telemedicine consultation to visit with a UPMC Children’s cleft-craniofacial specialist from the comfort of their own home. Surgeries and in-person visits take place at UPMC Children’s main campus in Pittsburgh’s Lawrenceville neighborhood. To make an appointment, contact the center at pghcleftcranio@chp.edu or call 412-692-8650.

Sources

About Pediatrics

From nutrition to illnesses, from athletics to school, children will face many challenges growing up. Parents often will make important health care decisions for them. We hope to help guide both of you in that journey. UPMC Children’s Hospital of Pittsburgh ranks consistently on U.S. News & World Report’s Best Children’s Hospitals Honor Roll. UPMC Magee-Womens Hospital is a longtime national leader for women and their newborns. We aim to provide the best care for your children, from birth to adulthood and beyond.