When Clare Griswold watched her newborn son, Desmond, sleep, she noticed his body would twitch. The twitching would wake him up, which led to even less sleep — for both of them. At two months old, Desmond was evaluated by a doctor and diagnosed with benign neonatal sleep myoclonus – a sleep disorder common among newborns that can involve the twitching of a single limb or the entire body.
Desmond also was frequently ill. “He was refluxing, but never spit up,” explains Clare. “Instead he aspirated everything that went into his mouth and the reflux.” As a result, Desmond was sleeping only two non-consecutive hours a night. He was also doing nebulizer treatments every four hours. Clare and her son needed help.
Desmond’s doctor wasn’t willing to treat the reflux because Desmond was meeting all of his developmental milestones and there was no diagnosis to support that something was wrong, Clare says. To receive the help Desmond needed, Clare asked for a referral to pulmonology and changed his family doctor.
Other things started to change, too.
In February, Desmond had tubes placed in his ears. Also specialists at Metro Health Hospital completed a rigid scope to visualize his airway, which helped them to better understand the problem.
Doctors said Desmond should use a feeding tube for two months. Next, he was referred to Mary Free Bed’s Feeding Clinic to help with swallowing exercises.
“The therapists taught me how to help him,” says Clare. “The support was really important to me.”
Desmond, Clare and Mary Free Bed occupational therapist Rose Peltom worked as a team on the swallowing exercises with a goal of getting Desmond to eat one ounce of each food group each day.
Desmond did well in the feeding clinic and graduated a couple months early. Today he continues with tongue exercises to help with swallowing. He uses the feeding tube only for hydration.
“Rose worked well with Desmond,” shares Clare. “She was calm, peaceful, and has a lovely demeanor.”
Desmond continues to improve. He loves eating sweet potatoes and bananas. Next month Desmond will complete another rigid scope to look specifically for a tracheoesophageal fistula (TEF), tracheomalacia, and/or tracheal cleft.
Clare remains hopeful on this journey with her son and is thankful for the people who have helped along the way.
“Mary Free Bed is a wonderful place to get the support you need as a parent, and support you need for your child. But mostly it’s teaching you how to deal with your curve ball,” says Clare.