Tristan
Tristan has a rare brain condition called Polymicrogyria (PMG). PMG is a condition characterized by abnormal development of the brain before birth in which the neurons become disorganized and land in the wrong places. In children born with PMG, the brain develops too many folds, and the folds are unusually small. These small folds do not process the information it receives like a normally formed brain. This causes problems with functioning in the body much like how the effects of a stroke can affect the brain. In Tristan’s case, both sides of the brain are affected. The full description of Tristan’s condition is Bilateral Perisylvian Polymicrogyria. For Tristan, this will affect speech, swallowing, and respiratory. Tristan most likely will never be able to speak, and may or may not need a feeding tube, as eating issues are very common in children with PMG. He will likely experience swallowing and speech issues, developmental delay, respiratory issues, lack of muscle coordination and seizures of varying degrees.
With mild cases of PMG, many children are often misdiagnosed with Epilepsy, Cerebral Palsy, or having a developmental delay. It is very important to take the next step in obtaining an MRI to find out the cause.
An ultrasound done at the five month mark of pregnancy showed us we were having a boy. By the time I got home I received a call from my family doctor stating that they couldn’t get a reading on his hands and feet, so they were going to send me to McMaster Children’s Hospital for an in depth ultrasound. After a lengthy ultrasound, the doctors thought Tristan had another genetic condition and said that it did not look good for him. We were followed very closely at McMaster with an amniocentesis, genetic testing, blood tests, and many ultrasounds. With each ultrasound, things slowly began to get ruled out. It seemed Tristan was growing well, and finally doing things he wasn’t before, like opening his hands. He had clubbed feet, which are now being treated.
Delivered by emergency C-section, Tristan came out a healthy size, and he seemed very healthy physically, and was overall a quiet, content baby. He did have some trouble feeding but eventually learned successfully to take a bottle.
Fast forward to three months of age, Tristan was sick with a common cold around Christmas. On January 2, we noticed what we thought was a febrile seizure from the fever (very subtle presentation, almost as if he was just looking to the ceiling). Tristan was treated at Guelph General for his cold and fever and was kept overnight. Doctors weren't able to witness these ‘episodes’. Two days went by and his episodes were more pronounced and lasting up to 15 minutes where he would clench up and then release, and this would happen multiple times. Throughout those two days, I was reading lots online about “infant muscle spasms” and came across Infantile Spasms, a serious and severe form of epileptic seizure in infants. We called every doctor and every nurse we’d ever been in contact with to try to get Tristan looked at right away. Ultimately I packed Tristan up and took him to McMaster, and said I was not leaving until he was thoroughly examined and had some sort of test done to confirm or deny the Infantile Spasms. Fortunately, a doctor was able to see Tristan have an episode. An EEG confirmed Infantile Spasms and Tristan was started on anti-epileptic medication. Amazingly, we got an MRI scheduled for the next day thanks to many prayers from family and friends.
The MRI showed a brain malformation, Polymicrogyria. The neurologist told us about the condition and that they would not know how severely Tristan would be affected until he got older. In the meantime, the seizures needed to be stopped before Tristan had any further damage done to his brain. The initial medication did not work for Tristan so he was put on a steroid treatment for one month. Within the first week, the seizures reduced and stopped, and to date he has not had any other seizure activity and is not on any medication. He finally started thriving around the five-month mark.
Tristan is now almost 10-months-old, and we are starting to notice a delay. He is unable to roll over or sit up, unable to hold objects in his hands, has very low muscle tone and is very floppy to hold. He also has no muscle coordination with his arms and legs. We are just starting to introduce pureed foods and with swallowing difficulties, he can manage to ‘taste’ them. He does still take a bottle fairly well, which we feel very lucky about. At times, it’s almost like he forgot how to eat – this is and will be normal for him. It is his brain's inability to properly communicate with his mouth and throat, so eating is much more difficult and tiring for him. He does not sleep well, usually no longer than a couple hours at a time.
On the other hand, Tristan is a very happy child. He is very social and always wants to be looking at you and interacting with you. He is much more interested in people than toys – always. He may never be able to speak, but the way he exhibits expression through his eyes and face shows that he definitely won’t have any trouble being understood. Otherwise he is physically healthy and finally putting on weight. I could easily go on about how cute he is!
Friends of ours referred us to the Guelph Wish Fund for Children. We met and shared Tristan’s story, learned about the Wish Fund’s vision and purpose and were told that an account would be set up for Tristan. We were shocked and overwhelmed by the gesture. A gift so special is only made possible by kind, giving hearts. This gift is life changing for its recipients. What a chance to be able to do something, anything, with no limitations and to have it given to you by complete strangers simply because they care. On behalf of Tristan, from the bottom of our hearts, we can’t thank the Guelph Wish Fund for Children enough.