Salah and Reem Mustafa knew their fourth child was going to be born with a cleft lip and palate. They learned about the birth defect during a prenatal ultrasound.
Upon hearing the news, Reem, a former chemist, immediately turned to the Internet to learn more about it. The images she discovered online terrified her.
“I didn’t even know the term cleft palate. I had to have it translated,” said Reem, who is Palestinian. “When I searched for information on Google, the random sites I found made me more worried.”
Shortly after their daughter, Noor, was born, her family took her to an office visit with Dr. Murthy, who helped advise them on the best way to feed Noor.
She has to use a special squeeze bottle with a a wider aperture in the nipple. It allows pressure to be gently applied to help get the milk to the right place in her mouth. It requires families to be extra vigilant in burping.
At 1 month of age, Noor underwent a procedure to insert an appliance to help bring her gums together. The appliance creates a temporary palate to help Noor eat.
On Nov. 15, Noor had her second procedure – a lip and nose revision. The family allowed us to follow them on this day in the hopes of helping other families facing the same surgery.
The Mustafa family checks in at admitting before they head up to the pre-surgery waiting room.
Reem gets Noor ready for her pre-surgery exam.
Pre-op nurse Janice Gabel examines Noor before surgery. She checks her measurements and vitals, and asks a series of questions.
Despite not having eaten in 8 hours, Noor still finds Janice entertaining.
Child life specialist Michelle Peterson reassures mom about the surgery.
Noor’s dad, Saleh, holds her before surgery.
Reem kisses Noor goodbye before she goes to surgery.
OR nurse carries Noor to the OR.
After inserting the breathing tube, the anesthesiologist checks Noor’s heart rate.
Dr. Murthy said Noor’s cleft is about as wide as his thumb.
Dr. Murthy takes photos of all of his patients so he can use it as a learning tool.
Dr. Murthy spent about 3 hours measuring, marking and repairing the hole in Noor’s lip and reshaping her nose.
Dr. Murthy is hopeful that Noor won’t need another lip and nose surgery when she gets older. He said about 60% don’t.
Very little is known about the cause of the actual cleft. The lip forms between the 4th and 6th week of gestation, and the palate forms at about 8-12 weeks gestation. Dr. Murthy said some sort of mishap occurs during this time that results in cleft lip and palate.
After surgery, the OR team wheels Noor into the post-anesthesia recovery unit (PACU).
Dr. Murthy brings Noor’s parents back to see her in the recovery unit.
“It was such an emotional time for us to see Noor after the operation,” Reem said.
A PACU nurse checks on Reem and Noor.
Reem called her family in Jordan to let them know Noor’s surgery went well. “It was 1 a.m. in the morning in Jordan, but all of my relatives were still up and waiting to hear from us about how things went. It was wonderful that we all were able to rejoice and pray together.”
The rest of the Mustafa family comes back to see Noor. Her brother and sisters were equally amazed at the results of the surgery. Her 9-year-old brother, Ahmed, exclaimed, “She looks beautiful.”
Noor spent one night in the hospital, with her mom by her side.
The Mustafas brought Noor back for a follow-up appointment the following week. She will see Dr. Murthy again in 3 weeks.
The next step will be the cleft palate repair, which typically takes place 3 or 4 months after the lip and nose revisions.