Ottawa residents Ashley McKellar and Ryan Haynes were full of anticipation after learning that they would be having a son. Ashley’s first pregnancy was going well and as expected. Her first ultrasound looked good. Yet surprisingly, their child Isaac was born with hydrocephalus and an uncertain future. The doctors did not know if he would be able to walk or see. Four days after he was born, a shunt was installed to drain the cerebral spinal fluid. This is their story.
Ashley’s doctor requested a second ultrasound but told her she could cancel if she wanted due to pandemic restrictions. Ashley went ahead with the procedure, but Ryan had to wait in the hospital parking lot.
After the ultrasound, Ashley was told by the technician that her OB-GYN would call her later, but she was not given any more information. Ashley and Ryan were worried. They knew something was wrong with their baby, but they did not know what.
The following day, Ashley’s doctor requested another ultrasound. Both sets of parents waited with Ryan in the hospital parking lot for news. They found out the ultrasound showed that the baby had a brain bleed and profound hydrocephalus. Time was of the essence, so a caesarean section was scheduled immediately.
This was a terrifying time for Ashley and Ryan. They worried about how they would care for the baby; whether their home would need modifications and whether they could afford his treatment and care. Ashley also wondered whether she had caused his hydrocephalus and felt much guilt.
Isaac was born successfully by C-section, but Ashley was separated from him while she recovered. Isaac was placed in the neo-intensive-care unit at CHEO for further tests to determine the level of his hydrocephalus, its cause (a brain bleed in utero) and when surgery would be feasible. For the first few hours after his birth, neither Ashley nor Ryan was given any updates, which exacerbated their worries.
Seeing Ashley’s distress, a nurse gave the couple directions to the neonatal unit at CHEO and found a wheelchair so that Ryan could take her there, despite the pandemic restrictions. They needed to see and hold their baby.
For the first time, Ashley and Ryan learned the importance of advocating for the resources that would help as parents and for Isaac too. It was not always clear how to get help and they faced many roadblocks besides the pandemic. Requests often had to be repeated before they were granted.
Ashley and Ryan viewed every medical appointment as an opportunity to gain knowledge. No matter what happened, they would face each challenge together as a family. While Isaac recovered in hospital after his surgery, Ashley and Ryan took turns staying with him and sleeping in a chair by his side.
About a year after Isaac was born, Ashley reached out to Hydrocephalus Canada. It has provided a wealth of information and has allowed her to form friendships with other parents of children with hydrocephalus. She became a parent link because she wanted to connect with other parents, be a resource to listen and support others on their journey.
Today, four-year old Isaac is like any other child his age: healthy, active, curious and has many friends at his pre-school. He also loves playing with his dog, Luki. His parents treat him like any other little boy.
Ashley and Ryan are grateful for meeting other families who have a child with hydrocephalus, both virtually and in person. All these friendships have been made through Hydrocephalus Canada.
“The monthly parent support group is a wonderful place to come together, learn from each other and have people who can understand your concerns and celebrate your victories,” Ashley says. “We also have friends who have children with different needs. We celebrate the uniqueness of everyone, through the triumphs and struggles. We love having books to talk with others about awareness and inclusion to create a more accepting perspective for all abilities.”
Having a child with hydrocephalus has taught Ashley and Ryan the importance of a support system and to lean into it. Most of all, it taught them that they are not alone.
They have many hopes for Isaac and see his future as bright as he continues to find joy and explore the world around him.
“We know he will always be kind and loving to those in his life. We look forward to seeing him continue to be curious, run wild with his imagination, be healthy, and pursue what interests him. We are excited to see Isaac grow up, we will always be proud of him and love him.”
