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;
- Physiotherapy, for his gross motorskills;
-Osteopathy, namely, Trudy Bedard from Head Neck and Jaw, whom plays the most important role for Wyatt's improvement for speaking, swallowing and eating;
- Anaesthesia, he was difficult to intubate;
-Chiropractor done every 6-8 weeks;
-PED Dentistry, to clean and monitor his teeth for decay.
Additionally, Wyatt did not blink very much, although it has now normalized. After a feeding study, it was confirmed, Wyatt does not swallow. As his parents, we believe, Wyatt could not swallow or open his mouth in utero, (he had a low birth weight and mom had an abonormal amount of amniotic fluid).
Wyatt has been seen by Dr. Hazel, from Synergy Chiropractic Wellness Centre since June 2014, and we have found that he is less stiff when turning his torso to follow an object. With that said, he still does not follow an object normally - a child should use their neck to follow an object, whereas Wyatt uses both his neck, and compensates with his torso once his neck cannot turn any further. Additonally, Wyatt's swallowing has improved, he is eating minute amounts, (ie: less than 1/2 tsp), which can be found within his stomach contents when venting him.
An interesting side note to Wyatt's eye sight, is that if you drop something right underneath his chin, he cannot follow it. His flexor muscles are so weak (confirmed by his neurologist, Ostheopath, Occupational Therapist and Physiotherapist), that he can look down, but has difficulty bringing his head back up. For example, if mom places a block between his legs, Wyatt will use his hands to 'search' for the block, and without actually looking at it, will pick it up. The flexor muscle, coincidentally, also aids with one's swallowing. Mom and dad did daily exercises with Wyatt which involved lying him down, and raising him from the supine position to sitting by using his arms to raise his torso. This movement helped with his head and neck to 'anticipate' being raised, and to use his flexor muscle to keep his head in a forward position. His gaze and tracking improves slowly with physiotherapy exercises, and an active family lifestyle.
Wyatt had a Gastric Emptying study done in November 2014, and according to the Gastroenterologist, Wyatt's stomach empties quickly and correctly.
Wyatt is able to sign well over a hundred signs now, his mom and dad cannot keep up with him any longer!
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 repercusions.
A recent addition to Wyatt's care plan is a TENS unit attached to his temple (frontalis) muscles and one attached at the base of his neck. Wyatt's opening has improved and he is speaking a lot more, even pronouncing better!
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.
As of July 2017, Wyatt will be attending school in September 2017, with a nurse to take care of his feeds, medications and hopefully, his suctioning. Wyatt will be going to the same school as both his sister and brother, so we're really excited for this new chapter in our lives!
We'll continue to have this website active for parents who may find themselves in the same position as we were three years ago, giving birth to child who could not open their mouth.