KS95 for Kids

Teddy

KS95forKids_Teddy_1280x720

Theodora (Teddy) Bailey


There are few moments in life as exciting and anxiety-inducing as the day you have your first child, but for Andrew Bailey and his wife, Amanda, things were a bit more complicated. Amanda was home in Connecticut getting ready for her baby shower. Andrew, a pitcher for the Boston Red Sox at the time, was in Seattle for an away game.

“You do your best to make plans, but there are some things in life you can’t plan for,” Amanda says. “I was at 34 weeks, but our little girl decided to come early.”

Andrew hopped a cross-country flight to be by Amanda’s side for the birth of their daughter, Theodora, known affectionately as Teddy. But for the Baileys, their journey was just beginning.

Teddy was born with a tracheoesophageal fistula (TEF) as well as esophageal atresia (EA), two potentially life-threatening conditions for a newborn. The Baileys spent the next three weeks in the neonatal intensive care unit.

At the end of this time, Teddy received a clean bill of health and was finally able to go home. Five days later, Amanda found Teddy in her crib; she wasn’t breathing.

“It’s something you try not to think too much about now,” Amanda says. “I began performing CPR and called for help. It was the scariest six minutes of my life, but somehow I was able to do everything I needed to do to bring Teddy back to life.”

The Baileys were readmitted to the hospital and spent six weeks there while Teddy’s apnea spells were monitored and assessed. During this time, tests revealed that Teddy had what is known as periventricular leukomalacia (PVL), or severe damage in the white matter located around the ventricles of the brain.

The symptoms of PVL vary from child to child, but it often makes it much more likely that a child will have difficulty controlling certain motor movements. It also puts a child at a much greater risk of developing cerebral palsy (CP).

Teddy would receive a diagnosis of CP and need additional medical care and therapy as she grew, but she was rolling over at 10 months, walking at 20 months, and at age 6, is in every way on par with her peers cognitively.

CP isn’t just one condition. It’s actually a spectrum of movement disorders that manifest in symptoms that vary from child to child. In children like Teddy, who had PVL, the most common type of CP that results is called spastic diplegia. This is a form of CP characterized by tight, contracted muscles, especially in the legs.

The Baileys visited Gillette Children’s in January of 2017, where Teddy was evaluated and had a gait analysis. It was determined that she would be a good candidate for rhizotomy surgery.

“That visit put us at ease,” Amanda says. “I wasn’t sure what to expect, but I was very impressed by how knowledgeable and kind the staff was. It was so clear that working with kids like our daughter was what they were all about. How do you say no to that?”

Rhizotomy surgery removes the faulty nerve roots in the spinal cord that are misfiring and causing this tightness. This effectively relieves the spasticity of the muscles, the only problem being that now you have to learn how to use muscles you’ve never really used before. The rehabilitation process requires carefully scheduled physical and occupational therapy that usually lasts between four to six weeks.

Andrew says that for Teddy, as well as her younger and equally adorable brother Matthew, their rehabilitation stay following rhizotomy in December of 2017 felt more like going to camp than anything else.

Teddy, now discharged and home is continuing in her therapies. Most importantly, she continues to thrive in her very full and vibrant life, enjoying soccer, swimming, reading, drawing, baking and singing.