After years of trying to get pregnant, longtime Children’s nurse Jenn Keeton and her husband, Kevin, decided to pursue fertility treatment with the help of the Children’s benefits program, and on their third round of in vitro fertilization (IVF), the Keetons got pregnant with their son, Wyatt.
They were thrilled to finally be pregnant, but during Jenn’s 20-week ultrasound, doctors noticed that Wyatt’s bone development was behind. A genetic test determined that the Keetons’ son had one of two forms of dwarfism. “Doctors couldn’t be sure until after Wyatt was born whether his type was a lethal form where heart and lung development are restricted. So they watched us closely throughout my pregnancy,” Jenn recalls.
Wyatt was born at 37 weeks without complications and was diagnosed with Spondyloepiphyseal Dysplasia (SED), a very rare, but thankfully not lethal, form of dwarfism. He went on to spend a week in the NICU because he was born with very low muscle tone and would fail his car seat test twice. “We realized that positioning Wyatt in things made for average size babies was going to be a challenge for us,” Jenn says. As soon as they arrived home, they enrolled Wyatt in physical therapy. The full extent of his needs wouldn’t become clear for a few more weeks.
At 11 weeks old, doctors diagnosed Wyatt with spinal cord stenosis. Common in children with dwarfism, the disorder is caused by the fact that the heads of children with dwarfism are disproportionate to their smaller frames, resulting in pressure on the spinal cord. William Wrubel, M.D., a Children’s neurosurgeon, told the Keetons they could hold off on surgery, perhaps not needing it at all, if they put Wyatt in a cervical collar, which would reduce the pressure on his spine. “We went to several clinics to find a brace for Wyatt, but no collar was small enough.”
Determined to help Wyatt avoid surgery, the Keetons decided to make Wyatt’s collars themselves by cutting a tiny strip off of a full-size adult brace. “Wyatt’s spinal stenosis is almost completely resolved, so he won’t have to undergo surgery,” Jenn says. “He’ll wear the brace for the foreseeable future until this is resolved. I buy fabric for the collars—all kinds of colors and themes. He must have at least 30 by now. We have fun with them.”
Wyatt’s doctors and the Keetons will work together for years to come. Developmentally, Wyatt is behind for a 1 year old. He is unable to crawl or stand, and he sees an ophthalmologist every few months, as children with dwarfism are often nearsighted and at risk for retinal detachment. Doctors will also monitor Wyatt’s hearing; while his hearing is normal now, he’s at risk for hearing loss.