Victoria Johnson’s pregnancy was picture perfect. There was no indication before little Summer was born that anything was wrong. When Summer entered the world in July 2011, she looked and acted like any other newborn, except for one thing.
“When she would breathe, it sounded like she had something caught in her throat. Every time she took a breath it sounded really chunky. They said she aspirated when she was born, and that it should disappear in 24 hours. When it hadn’t, we became concerned.”
After three days with no improvement, the Johnsons decided to have Summer transferred from the hospital she was born in, to DMC Children’s Hospital of Michigan, by PANDA one – Michigan’s only dedicated pediatric and neonatal ambulance service. Upon her arrival, doctors examined Summer’s throat and airway using tiny scopes designed for babies…and discovered something they weren’t expecting.
“My husband asked ‘Well, is this going to require surgery?’, and they said yes. Our next question was “how long are we talking about being in the hospital?’, and the answer was ‘Months.’”
That’s when Dr. Michael Haupert, chief of the Department of Pediatric ENT, got involved. Haupert has been at DMC Children’s Hospital of Michigan for 19 years and had never before seen Summer’s combination of defects.
“The scope revealed a very rare abnormality,” said Haupert. “It’s called Type 4 Posterior Laryngotracheoesophageal cleft. Basically, the partition that’s between the esophagus and trachea wasn’t formed. We should have two separate tubes: the trachea for breathing, and the esophagus for eating, with a partition between the two. So when Summer would eat, it wouldn’t necessarily go down the esophagus into the stomach, it could go into the lungs and she could aspirate; she could get pneumonia, and it has to be corrected.”
“Additionally, Summer had an anomaly where she had extra tissue that went from the trachea into the upper lobe of the left lung. We normally have just two openings to the upper and lower lobe. I’ve never seen it in association with a cleft like she had.”
Summer’s condition was very serious; her chance of survival was only 50 percent. Her parents felt like they were living in a nightmare. After the scope, Dr. Haupert knew that had to do something relatively soon, due to her increased risk of aspiration and pneumonia. Pediatric surgeons were consulted to reconstruct the esophagus, and Haupert and his colleague Dr. Saraiya would reconstruct the airway.
“Summer’s father, Desi Johnson, said of Dr. Haupert “He was able to sit down and explain things to us with sincerity and confidence, and the way he communicated with us made me believe that he was going to take care of us.”
The surgery was performed when Sumer was just nine days old, taking 11 hours to complete. There were no issues, and the doctors accomplished everything they wanted to accomplish. Although satisfied with the outcome, it was clear that there would be a long road to recovery.
Summer was put into a medically-induced coma to prevent her from moving and tearing her delicate repairs as they healed. She was connected to a ventilator, and a machine to keep oxygen in her blood. Once off the ventilator, a tracheotomy (a small opening in her throat) was required to help keep the airway open.
It was challenging time for the Johnson family – they couldn’t hold Summer during her recovery – but five months after her arrival, they were able to take Summer home. Physically, she was still at a newborn level, so she had to do a lot of work to catch up to where she needed to be.
Nearly two years later, Summer is a happy, healthy active girl. She still has her tracheotomy tube to keep her airway open, but just for the next few months. It doesn’t slow her down. As months passed, she learned to walk, talk, dance and sing, just like any other child.
Dr. Haupert thinks her future is bright. “She’s got a wonderful family supporting her. She’s developing. She’s got a wonderful personality. I think she’s going to grow up to have a normal life.”
“I believe DMC Children’s hires and attracts people who care, people who want to make a difference, people that have a passion and people that have a love to care for children,” says Desi. “And I believe that Dr. Haupert and every other doctor have been 105 percent dedicated to making sure my baby girl gets better.”
To connect with a DMC Pediatric Specialist: Call 888-DMC-2500.