Picture Perfect: Cleft Surgery Heals Patient and Family
As Kari Niebaum neared the end of her second trimester, she thought she was in the clear. She and her husband, David, knew cleft lip and cleft palate ran in their families. But hopes were high that the genetic link would bypass baby Lilian as it did their 5-year-old son, Jack. All seemed well until Kari's 20-week ultrasound, when her worst fear came into view.
Receiving the News
The routine ultrasound revealed some of the tell-tale signs, but a perinatologist visit confirmed the diagnosis. Cleft lip and possible cleft palate. Despite the genetic link putting them at increased odds, the news still came as a shock.
"We were devastated with the diagnosis," Kari said. "It made the last half of the pregnancy really anxious. We kept thinking, 'why do we have to go through this when other people are having healthy babies?'"
Kari struggled to stay positive. Her vision of a healthy, smiling baby was suddenly replaced with unsettling images she saw online – gaping upper lips, roofs of mouths split down the center. Then there were the nightmarish tales of feeding difficulties and numerous surgeries. All the traumatic possibilities began to swirl in Kari's head.
Luckily, the expertise and encouragement she needed were close by.
Kari was referred to Children's Mercy Hospitals and Clinics – where she also works as a care assistant in the Dermatology Clinic. Kari knew she and Lilian were in the best hands, and her fears were quickly put to rest. She and David met with a team of clinical specialists who talked through the diagnosis, presented treatment options, and created a detailed care plan. Though the cleft lip diagnosis was certain, they would have to wait until Lilian was born to know whether the roof of her mouth was also affected (cleft palate).
Best Case Scenario
Lilian was born May 17, 2012. Right away, there was good news. While Lilian did have a cleft lip – as expected – her palate was just fine. This meant she would likely need just one surgery to correct the issue. Shao Jiang, MD, medical director of the Cleft Lip and Palate Program at Children's Mercy, recommended using a pre-op device called a Nasoalveolar Molding.
The orthopaedic appliance is gradually adjusted to realign some of the cleft issues, laying the groundwork for a better surgical outcome.
Lilian was fitted with the device at 5 weeks old, and it was kept in place until she reached 5 1/2 months. Dr. Jiang determined Lilian was ready for surgery. And the results – picture perfect.
A Shining Outcome
Now 1-year-old, Lilian – and her parents – are all smiles. The surgery results exceeded expectations, and Lilian's cleft lip only exists in photos stored on Kari's phone.
"We were all very pleased," Kari said. "Dr. Jiang was wonderful. Lilian had great results. Everything has been peachy since then."