Written by: Kelli Dalseide, Sam's mother
Sam Dalseide was born 15 weeks early and, like many preemies, experienced a number of medical problems. The most serious and persistent was a “floppy” windpipe that made it impossible for Sam to breathe. After reconstructive surgery at another institution failed to fix the problem, his parents came to the Aerodigestive and Sleep Center at Cincinnati Children’s Hospital Medical Center. Here, specialists identified and treated a previously undiagnosed problem that likely contributed to the first surgery’s failure. Then they performed a second reconstructive surgery, which was ultimately a success. Sam’s mother, Kelli, tells their story.
Sam was born in 2002, and he was tiny. He weighed just a pound and a half and was only 13.5 inches long. His ears drooped like a puppy’s, and you could see straight through his skin to his veins. My husband, Cliff, and I wondered if he would even make it. Sam spent five months in the neonatal intensive care unit near our home in Richmond, Va.
Sam’s lungs didn’t work properly at first. They just hadn’t had a chance to develop in the womb. He was on a ventilator for 13 weeks, partly because his windpipe was very floppy, making it difficult for air to get through.
Doctors diagnosed him with tracheomalacia, which occurs when the cartilage in the windpipe, also known as the trachea, has not developed properly. They told us he’d probably grow out of it within a few years, but in the meantime he would need an artificial airway to breathe. So, before Sam was discharged from the hospital, he had surgery to create an opening through the neck to the trachea. This opening is called a tracheostomy, and for the next five years, it’s what Sam used to breathe.
Bringing Sam Home
When we brought Sam home after 143 days in the neonatal intensive care unit, he needed round-the-clock care. We went through 50 home care nurses. It seemed like no one was really equipped to deal with his trach. The trach made it impossible for Sam to cough or swallow properly, so we had to suction him when mucus built up in his throat. Infections were always a worry, and he had difficulty eating.
Over time, Sam stabilized and, other than having a trach, he was pretty much a normal kid. We took him back to the hospital regularly for tests to monitor the tracheomalacia — we were really hoping to get rid of the trach. Sam had countless bronchoscopies, which involved putting a tube down his throat under anesthesia to view his airway. The tests never showed much improvement.
So when Sam was 3, we started talking to our doctors about the possibility of surgical reconstruction. It would involve grafting donated rib cartilage to the lower part of Sam’s windpipe to support his airway so that he could breathe normally. An otolaryngologist (ear, nose and throat specialist) performed the surgery at a medical center not far from our home.
The surgery seemed successful at first. But after three days in the hospital, Sam’s airway weakened again. One night, his breathing was so labored that doctors had to perform an emergency tracheostomy to insert a new trach. We were back to square one.
A Missed Diagnosis
Our doctors didn’t know why the surgery ultimately failed, and we weren’t sure what to do next. So we waited and hoped. A couple of years later, a friend of mine recommended we go to Cincinnati Children’s for a second opinion. Her son had recently received excellent care for a similar problem at the hospital’s Aerodigestive and Sleep Center. I called, and a few days later had a lengthy phone conversation with a nurse. Then the medical team talked about Sam’s case and said they would like to evaluate him in person. We made the nine-hour drive to Cincinnati for extensive testing in August 2007.
What impressed me right away was the Aerodigestive and Sleep Center’s multi-pronged approach. Sam was examined byDr. Robin Cotton, an otolaryngologist, Dr. Paul Boesch, a pulmonologist (lung specialist) and Dr. Philip Putnam, a gastroenterologist (digestive specialist). Together, these doctors were able to consider Sam’s problems from different perspectives and develop a coordinated plan of care. And they conducted all the necessary tests in just two days, which saved us additional trips to Cincinnati.
During this visit, the medical team determined that Sam’s airway could be reconstructed surgically. But they also diagnosed him with eosinophilic esophagitis (EE), something that all our other doctors had missed. EE is an inflammatory disease of the esophagus, the tube located behind the trachea that connects the mouth to the stomach. EE was more than likely one reason Sam’s first airway reconstruction failed: the inflammation had disrupted post-operative healing.
At Long Last… Success
Working together with Dr. Putnam we developed a plan to manage the EE with medication. We returned to Cincinnati Children’s about four months later for a check-up. By then, the EE was under control and Dr. Cotton felt that Sam was ready for another airway reconstruction surgery.
This surgery would be similar to the one he’d had two years earlier, but with a few key differences. Dr. Cotton would use two rib grafts (not one) and he would use rib cartilage from Sam’s own body. His approach gave us reason to hope, as did the fact that Sam’s EE was unlikely to interfere with the healing process this time.
We had complete confidence in Dr. Cotton and the rest of the team. Dr. Cotton does a number of these surgeries every month, and the nurses have extensive experience with kids like Sam as well. We also were comforted by the fact that Cincinnati Children’s has a specialized “airway unit” for kids recovering from this type of surgery. Sam would receive advanced inpatient care from a dedicated team.
The surgery took place in March 2008, and it was a complete success. Sam was hospitalized for two weeks, and we stayed in town for another two weeks to make sure his airway remained stable. Today, Sam’s airway is in great shape. He doesn’t have any problems breathing, swallowing or eating. The care he received at Cincinnati Children’s was exactly what he needed, and we are really thankful.
When Sam was sick as a baby, I wondered if he’d even make it to kindergarten. But now he’s just a normal first grader. He plays soccer and takes piano lessons, and is a true Lego man. We never dreamed he’d do so well, and we are so thrilled.