Cleft Lip and Palate: Logan's Story
Patient Story Highlights
Sometimes it would seem you can look at a child’s photos and tell in an instant whether they are well loved. Logan’s baby pictures are like that. He looks well loved.
There are other distinctions in those photos too. In Logan’s first precious months of life, he looked different from other babies. The earliest explanation would come during his mom Jodi’s 20-week ultrasound, when she was pregnant with Logan and twin sister Lindsey.
The sonographer had been chatting easily with Jodi, describing her process as she moved the diagnostic wand over Jodi’s belly, checking out “baby A.” But when she got to “baby B,” she became quiet.
“She kept scanning the baby’s face over and over,” Jodi says. “I just knew … I asked her. I said, ‘There’s a problem, isn’t there?’”
Logan was ultimately diagnosed with a complete bilateral cleft lip and palate. Cleft lip and palate are among the most common birth defects in the United States, impacting about 1 in 700 children. They result from a failure of the bones and tissues that form the nose, lips and roof of the mouth to fuse during the baby’s development in the womb. Cleft lip and palate are among the most common birth defects in the United States, impacting about 1 in 700 children. They result from a failure of the bones and tissues that form the nose, lips and roof of the mouth to fuse during the baby’s development in the womb.
Cleft lip and palate can affect feeding, hearing, speech and dental development. It can also have a profound impact on a child’s self-image.
The diagnosis can be overwhelming and, in the moment, even devastating news for parents.
“It wasn’t something I had really heard much about before,” Logan’s dad, Joe, says. “It doesn’t run in our family. It was kind of a shock.”
Jodi remembers when she was first strong enough to hold Logan in the days after the twins’ birth (delivered a month early) — completely in love and making promises to her newborn son.
“I remember whispering to him and telling him we were going to do the very best for him,” Jodi says. “That whatever we had to do, we would do.”
The Best Care
Jodi and Joe wasted no time making good on their promises to do their very best for Logan. They had already done their research and had arranged for Logan to be treated by Alex Rottgers, M.D., a highly skilled pediatric plastic surgeon at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida.
Rottgers is the chief of the division of plastic and reconstructive surgery at All Children’s. He’s served two terms as president of the American Cleft Palate-Craniofacial Association (ACPA), and currently works with a multidisciplinary team of experts — the only ACPA accredited team in the Tampa Bay area — all of whom are focused on the goal of helping babies like Logan to receive the best possible outcomes.
Caring for patients who have cleft lip and palate is more marathon than sprint. To live his very best life, Logan will need comprehensive, longitudinal team care.
“We treat these children for about 20 years,” Rottgers says, “because with everything we do, we’re looking at their speech and development, at dental growth, and at surgical impacts on the growth of facial bones. We’re really not done until they’re finished growing as teenagers.”
Despite having performed hundreds of surgical repairs and revisions for cleft lip and palate, Rottgers had encountered few cases as severe as Logan’s. The baby’s top jaw was separated into three pieces. His upper lip was three pieces as well. He would need special, individualized care.
The Game Plan
Rottgers shared a “game plan” with Logan’s parents, carefully outlining each step, and answering all their questions.
“Because of the width and severity of the cleft, we couldn’t just proceed with the repair,” Rottgers says. “That would have set him up for all kinds of secondary deformities and problems.”
Instead, at 3 months old, an orthopaedic device called a Latham was surgically attached to Logan’s palatal bone and then periodically tightened — all to help pull the cleft together to allow for a more successful repair.
At 4 months old, it was time for Logan’s lip repair.
The prospect of saying goodbye to Logan’s special smile was surprisingly emotional for Jodi and Joe, even a little sad. But they knew it was time for Logan to get the repair he needed and to welcome in his “forever” smile.
Rottgers and the surgical team performed the complex lip repair as well as a primary nose reconstruction on baby Logan. All went exceptionally well.
But when Joe encouraged Jodi to look at her son’s face in the recovery room, she found herself hesitating.
“I just wanted my baby back. But I wasn’t sure what to expect,” Jodi says.
Jodi found her courage.
“I looked at his face … and it was wonderful, wonderful work. We couldn’t ask for anything better. He looked amazing.”
“It was the first moment we could see a change,” Joe says. “We felt assured in that moment we were on the right track for Logan.”
But while Logan’s lip had been repaired, he still didn’t have a normal palate (roof of the mouth, separating oral and nasal cavities), which would allow him to eat effectively and to begin to learn to talk. He still needed special bottles and required an intensive level of care.
Relief would come just before Logan’s first birthday.
Rottgers performed the cleft palate repair surgery (palatoplasty), closing the opening in the roof of the mouth and delicately arranging the muscles and tissue to support normal function.
As Logan began to heal, the difference in his development was dramatic. He was able to learn to eat normally and had fewer gastro-intestinal issues. He began to learn to talk. He was a giant step closer to living life with normalcy.
Today, Logan is a happy, active 6-year-old.
His speech is perfectly normal, he is social and enjoys his friends, and loves to be in the swimming pool now that summer is here.
He still has some surgeries in his future, and he’ll meet regularly with the cleft palate team at Johns Hopkins All Children’s — but he’s come a very long way.
Rottgers says Logan is doing so well, largely because his parents sought comprehensive care from an accredited team from the very beginning.
“Yes, you can do cleft revisions,” Rottgers says. “But you only get one chance to do it right and that’s what gives these kids the best outcomes.”
One day Logan will have his own story to tell about his medical journey.
“We never want him to be ashamed of his cleft lip and palate,” Joe says. “We show him his baby pictures. As he gets older, we’ll have conversations about how he should be proud of who he is. This just makes him extra special.”