Soon after Wyatt Scott was born in June 2013, doctors realized that he couldn’t open his mouth — a very rare condition called congenital trismus. A year and a half later, the cause is still unknown. In this essay for TODAY.com's "2014 Voices" series, Wyatt’s father, Andrew Scott, describes the family’s 24-hour-a-day struggle to keep the tot healthy and survive financially, while still enjoying life with their happy baby boy, who's starting to talk without opening his mouth.
In August, Wyatt was crawling around when he discovered a few pebbles and stuffed them his mouth. While it’s common for toddlers to put everything in their mouths, Wyatt’s no ordinary toddler. He has congenital trismus, meaning he can’t open his mouth.
Wyatt was diagnosed soon after birth. The most common form of trismus is lockjaw, muscle spasms caused by tetanus, making the jaw clench tightly shut. But Wyatt didn’t have tetanus. Sometimes fused joints cause trismus, but Wyatt doesn’t have fused joints. Diagnostically, everything about Wyatt appears perfectly normal — except he cannot open his mouth.
After he found the pebbles, we rushed to the Children’s Hospital of Eastern Ontario (CHEO). Amy Miville, Wyatt’s mom, and I are familiar with this trip. Wyatt’s been to CHEO at least 12 times because of choking or vomiting (even a simple cold blocks his airways).
When we arrived, we learned that a swallowed pebble rested on Wyatt’s vocal cords, in front of his windpipe. That meant the stone blocked his already compromised airway. The doctors needed to put Wyatt under anesthesia to remove the pebble, but that posed other risks. Anesthesia for Wyatt could mean an emergency tracheotomy or possible death. But the doctors at CHEO, guided by anesthesiologist Dr. Antoinette Coro, removed the pebbles with no complications.
Following Wyatt’s encounter with the pebbles, his siblings, 3-year-old Jude and 6-year-old Aila, have started picking up tiny things around him and throwing them away.
Despite everything, Wyatt is a happy baby. He loves paging through books, and he has started using sign language to talk to us. It’s adorable to watch him sign “butterfly” or “I love you.” Wyatt says Mama, Dada, Nana, Grandma, and even Aila (which sounds like eye-wa), all without moving his mouth.
His attempt to eat stones wasn’t the first time he gagged on something. In May, he choked on a small bit of chicken. When the doctors put him under anesthesia, they completed a bronchial scope and then inserted a g-tube, which delivers food four times a day directly to his stomach. It takes him more than an hour to eat because feeding him too quickly can cause reflux, a danger to his breathing. Amy blends all his food and puts it in a bag that connects to the g-tube. Often Wyatt crawls around while eating, sliding the bag of pureed food behind him.
Doctors still don’t understand why his mouth won’t open. Wyatt no longer undergoes Botox treatments because it didn’t seem to help. He visits a chiropractor, but I suspect it isn’t helping him. But he does enjoy his time there. We have to constantly monitor his oxygen levels and suction drool and mucous from his mouth. Because of this, a nurse comes during the night, which gives Amy and me time to sleep. The doctors feel unsure about running more tests, which might require Wyatt to be sedated, because it is so risky. Amy’s maternity leave will be ending and we’ll only have one income to support our family because Wyatt needs 24-hour care. We only have a nurse for a set number of hours.
If Wyatt makes it four weeks without becoming sick, he can undergo an MRI of his brain, brain stem, and jaw. We hope we will finally have answers, even if it is bad news. Amy writes regular updates about Wyatt on his website and people can donate to help with ongoing expenses.
Andrew Scott's story was told with the help of Meghan Holohan.
Find more of TODAY.com's 2014 Voices here.