Megan and Carson Adams had never heard of hydrocephalus until they sought treatment for their seven-month-old son, Jett. The couple lives in Elmsdale, PEI with Jett who turns two in December.
Jett was a very lethargic and fussy baby who would not eat. His parents knew something was wrong, then his symptoms progressively worsened. They took him to hospital, where he was diagnosed with a viral infection and sent home the same day. Jett’s health became worse and the next day, he stopped breathing.
Megan and Carson took Jett to another hospital, where the doctor ordered a series of blood tests and a CT scan which identified fluid on his brain – the presence of hydrocephalus.
A shunt was placed to drain the cerebral spinal fluid and then a second surgery placed holes in the cyst to allow the cerebral spinal fluid to flow through it. Thankfully, both surgeries were successful. Jett recovered fully and was sitting up and crawling shortly after the second surgery.
“I remember asking the surgeon after his second surgery if he thought he would be able to sit up and walk. Although the doctor told me he did not know, I knew that he would and that he would thrive, and he has. I never gave up hope.”
Jett no longer requires physiotherapy, but he has a speech and language pathologist.
According to Megan, “Jett is a sweet, kind and happy little boy who is laid back. He plays very well with the other children in his daycare and shares well with them. I have also learned from Jett that kids are very resilient.”
Megan and Carson reached out for resources and support to guide them through parenting a child with hydrocephalus. They joined a Facebook group for parents and individuals with hydrocephalus. Megan and Carson’s parents also help with childcare whenever needed. Megan’s workplace, Cavendish Agri Services, is very flexible in allowing her to take time off for Jett’s medical appointments. Carson, who owns a potato farm, accompanies her to them as much as he can.
As a couple, it has been challenging to manage Jett’s medical care. Says Megan, “When Jett first came home from the hospital, we were afraid to leave him alone with family members. Now it is easier, as he is doing well. I think it’s good to leave children with their grandparents and other family members.
“Whether it is once a week or once a month, parents need to set time aside to be a couple, even if it’s just for a walk or dinner out together. Take care of yourself to recharge.”
Having a child with a disability has made Megan and Carson more aware of disability issues. They want to use Jett’s story to raise awareness of hydrocephalus and disability issues in general and be a voice for other children. Megan also knows the importance of advocating for her child. She knew Jett did not have a viral infection and sought further treatment and tests at another hospital. If she had not, Jett may not have survived.
Jett continues to meet his milestones as the family looks forward to his upcoming second birthday. Megan is open to having a sibling for Jett one day. Onward and upward for this young family.
