Family Finds ‘The Best’ for Cleft Lip & Cleft Palate Repair at Lurie Children’s

Elizabeth’s unilateral cleft lip and cleft palate was a “delivery room surprise,” said her mom, Heather.

After Heather gave birth, the hospital near her Wisconsin home called in a team to help find a way to feed Elizabeth, whose gums were sticking out of the split in her tiny lip.

 “It totally threw us for a loop. It was terrifying,” Heather recalled.

Surgeries would be needed to correct the condition. Elizabeth was only a few months old when she had her first procedure, and 13 months old when she had her second. She spent a large part of her grade school years preparing and recovering from surgeries to correct the condition, having four surgeries before she was 10.

The fifth and sixth surgeries, the first of which involved a bone graft repair, were the “big ones we were waiting for,” said Heather. During the sixth surgery, surgeons were expected to finalize Elizabeth’s lip repair and straighten her nose to make it symmetrical on both sides.

The family’s hopes for the sixth procedure deflated just about 48 hours later when “everything went back to how it looked before.” The surgery at a Wisconsin hospital had failed, Heather said, and Elizabeth would face a seventh surgery before her 11th birthday.

To redo the lip and nose repair surgery, one of Elizabeth’s cleft specialists suggested they go to Ann & Robert H. Lurie Children’s Hospital of Chicago to see “the best in the country, Dr. Gosain."

A Depth of Expertise

Dr. Arun K. Gosain, division head of plastic surgery at Lurie Children’s and a professor of pediatric surgery at Northwestern University Feinberg School of Medicine, has expertise in pediatric craniofacial and vascular anomalies. He is also the head of the Craniofacial Development Biology Laboratory at Stanley Manne Children’s Research Institute, and travels around the world to perform and train others to perform cleft lip and palate repairs.

The Division of Plastic Surgery at Lurie Children’s, which in addition to Dr. Gosain includes Drs. Noopur Gangopadhyay and Akira Yamada, leads the hospital’s Cleft Lip & Palate Program. The program boasts a multidisciplinary team that involves specialists in otolaryngology, speech therapy, orthodontics, dentistry, psychology, neurosurgery, genetics and ophthalmology. Together, they offer comprehensive care and follow patients from birth into the teenage years.

'In really good hands' with Dr. Gosain

Dr. Gosain operated on Elizabeth for five hours to reconstruct the entire support structure of her nose. “We straightened her septum and addressed her lack of lining on the inside of her nose,” he said. “These two adjustments will give her a longer lasting result.”

When straightening the septum, Dr. Gosain removed excess bone and cartilage and used that material to straighten the tip of her nose.

“Prior to this surgery, her nostrils and nose were extremely unsymmetrical,” Heather said. “This procedure created almost perfect symmetry.”

Since the surgery, Elizabeth has worn nasal stents intermittently to ensure that her nose heals properly. She will likely stop wearing them this summer, and then she won’t need another surgery until high school.

The family knows they’re now with the right surgeon going forward.

With Dr. Gosain, whose extensive research on cleft lip and palate repair has been published widely, “Elizabeth feels like she is in really good hands,” Heather said.

Courage & Advocacy Work

Elizabeth and Dr. Gosain have also developed a meaningful relationship. He has helped her launch a networking platform in her hometown so teens managing cleft lip and palate can find one another. In addition, Dr. Gosain nominated Elizabeth to the American Society of Plastic Surgeons’ Patients of Courage program, which recognizes exemplary patients operated on by plastic and reconstructive surgeons throughout the country for their ability to “give back” to the medical community. This is an extremely competitive award, and Elizabeth has been selected as one of three patients to receive this honor in 2019, Dr. Gosain said. She is one of the youngest patients to receive this award in its history, and she will be recognized this September in San Diego during the American Society of Plastic Surgeons’ annual meeting. Dr. Gosain will be there to support her.

This follows Elizabeth’s impressive fundraising efforts for Operation Smile, a global nonprofit that funds corrective surgeries for cleft-affected children in underdeveloped countries. Last year, on her own accord, Elizabeth started a Facebook page to promote her Operation Smile team. She created videos with her friends, siblings and cousins to encourage others to give. In less than two months, her team raised enough money to pay for dozens of surgeries, costing more than $20,000.

“She has learned that her story inspires people to help others,” Heather wrote on her daughter’s fundraising page. “Can you imagine a more powerful lesson for an 11-year-old?”

Find out more or contribute to Elizabeth’s fundraising efforts for Operation Smile by visiting OperationSmile.org and searching for her name, Elizabeth Alberti.