Wyatt's Story

Wyatt was born on June 27, 2013, and had an emergency transfer to the Children's Hospital of Eastern Ontario (CHEO) because he could not open his mouth. The fear of needing an emergency intubation was of major concern for all of the medical staff, therefore, he required specialized care that only CHEO could provide.

 

We spent the next two weeks in the Neonatal Intensive Care Unit (NICU) and then an additional two months in Complex Care or the Ward. This is where we met Wyatt's Pediatric Doctor, Kheiri Issa. Wyatt's care at CHEO improved immensenly once Dr. Issa took Wyatt under her wing. By having a "hub" where all of the specialists referred to; Dr. Issa, Wyatt's prognosis for his Congenital Trismus was as follows:

 

- physiotherapy done on his mouth twice a day;

- suctioning nasally and orally when needed;

- having him connected to a Oxygen saturation monitor (O2 Sat monitor);

- teaching him sign language;

- being fed through a Gastric tube (G tube) until he learns to eat on his own.

 

As his parents, we were taught how to read the O2 monitor, feed and suction him, as well as, perform his physiotherapy, which was extended to chest therapy in January 2014, after a bout of pneumonia.

 

Wyatt is currently being followed by the following specialists:

- Ear Nose and Throat (for Botox injections, to paralyze his mastication muscles), this treatment ended in May 2014, as it proved to not aid with physiotherapy;

- Neurology (believed he had myopathic muscles around his jaw), a muscle biopsy was done, and confirmed his muscles were abnormal along his facial muscles, but normal in the bicep;

-PED Dentistry, to clean and monitor his teeth for decay.

-Opthomologist for his extropia, which will need to be operated on in late 2020.

Wyatt also receives the following services through the community (at school):

-Gross and fine motor skills physiotherapy by his Education Assistant (EA), along with reinforcing exercises identified by SLT ;

-Tube feeds and suctioning at school by his nurse;

-Speech language therapy (once a month);

-Dietician (once a month);

-An Individual Education Plan (IEP).

Initially, Wyatt had an Assistive Communication Device, an iPad mini specifically, funded through the province of Ontario.  The iPad helped him communicate the first two years in the school system, as few people understood what he was actually saying.  The apps that were supplied (Touch Chat for instance) helped him get his message across when signing and repetition failed.  Since grade 1 (September 2019), Wyatt hasn’t required the iPad, and speaks coherently for those who know him.

At home, Wyatt has night nursing in place, as he needs multiple interventions at night to keep his airway clear.  

Of note: Wyatt had a Gastric Emptying study done in November 2014, and according to the Gastroenterologist, Wyatt's stomach empties quickly and correctly.

Wyatt also had a plethora of other tests done in October 2015 - some of the results were very interesting.  Please visit Wyatt's Medical Tests page for full understanding of the results and their repercussions. 

 After the elective tracheostomy in October 2015, Wyatt was diagnosed with Brainstem Dysgenesis.  You can find more information regarding this rare disorder in the PubMed document titled Congenital Trismus From Brainstem Dysgenesis: Case Report and Review of Literature; ISSN Online 1098-4275.​

We'll continue to have this website active for parents who may find themselves in the same position as we were six years ago, giving birth to child who could not open their mouth.

What's Wrong With Wyatt?

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