Meet my Isaac, a pretty typical two-year-old. He is learning to talk, and he recently started putting his new vocal skills to work on our family’s Thanksgiving scarecrow decoration; he shakes the scarecrow’s hand at bedtime and says, “Miss you!” Isaac also loves to chase his twin, Nathan, play outside and swim. He’s a really happy kid, just like his brother.
Isaac has spina bifida and hydrocephalus, and he has been through a lot in his young life, starting with surgery to repair his spine the day after he was born. Isaac's spine failed to develop properly, due to the most serious and common type of spina bifida, which left him with an opening at his L5-S1 lesion, causing potential variations of nerve damage. Isaac also had hydrocephalus surgery two and a half weeks later to implant a shunt to drain excess fluid from his brain.
On top of all this, my boys were born six weeks premature and were cared for at different hospitals. Those first three weeks were really hard, with Nathan at The Ottawa Hospital and Isaac at the Children’s Hospital of Eastern Ontario (CHEO). I got so homesick and just wanted to be home in Kingston.
"The Spina Bifida and Hydrocephalus Association of Ontario helps so many families just like ours."
A difficult day
I had some knowledge of neural tube defects like spina bifida, as I’m studying for my Bachelor of Science in nursing, when I learned at 19 weeks that one of the twins I was carrying had the condition. But it didn’t really hit me until I got in the car after the appointment.
"I became really, really emotional. I asked myself, ‘Was it something I did?’ and I felt a tremendous amount of guilt."
The doctor gave Tyler (the twins’ dad) and I three options that day: continue with the pregnancy, terminate the pregnancy, or continue the pregnancy with only one baby. Being presented with both the diagnosis and the decision on the same day was difficult.
With the support of our parents, extended families, and friends, we decided to continue with the pregnancy. I had monthly ultrasounds to check for hydrocephalus, which can develop in conjunction with spina bifida. Throughout the pregnancy, the medical professionals I met with often emphasized the negative, including the possibility that the baby with spina bifida would never be able to walk, as nerve damage could impair him from the knees down, or that he would have to be catheterized.
Today, Isaac is thriving! He has good bladder function and doesn’t require catheterization. He’s learning to walk with the help of ankle foot orthosis braces and enjoys doing anything that keeps him moving. He’s also learned to get around in a child’s wheelchair, as well as a walker. Since his surgeries as a newborn, Isaac has required only one other surgery to replace a blocked shunt.
Great support from SB&H
After the twins were born, a nurse and a social worker provided us with information about the Spina Bifida & Hydrocephalus Association of Ontario (SB&H). I became a member of the Association shortly after that.
We are thankful for the ever-present support from SB&H. We value the resources and information that SB&H has provided that enable us to address Isaac’s unique needs, make informed decisions about his future and help us realize that there is no limit to his potential. It’s wonderful that the Association exists to give hope, share information and speak from experience.
Inspired by Isaac to create awareness
|Your Dollars At Work|
Children's Books like Wally the Wheelchair are provided free of charge to parents. They help children understand the conditions and celebrate abilities.
Direct Support: Connecting with SB&H is vitally important to many families.
$100=3 Hours of Direct Support
My experience with Isaac inspired me to organize Isaac’s Walk, the first Kingston-area SB&H Spirit Wheel Walk Run, an annual awareness and fundraising event for SB&H, with the participation of families and individuals from across Ontario. I wanted Isaac’s condition to be more known and better understood. So many people ask me, ‘What does he have? Why can’t he walk’? Creating awareness about spina bifida and hydrocephalus was my main goal.
Isaac’s Walk has had other benefits. After the Kingston Whig-Standard published a front-page article about Isaac's Walk, people would approach us at the park to tell me about knowing someone with spina bifida or hydrocephalus. And social media posts about the walk helped me connect with other parents of children with SB&H. I definitely plan to use more SB&H resources and programs as the twins grow up.
“The twins make me more motivated. They give me that extra push. They’re my motivators! They’re really happy, so I’m really happy.”
How you can help
For over 43 years, SB&H has been the leader in serving the needs of individuals affected by the conditions in Ontario. SB&H does not receive government or United Way funding and they depend upon caring friends such as you to touch countless lives through your donation.
I urge you to support SB&H with your gift of $25, $50, or any amount you choose to donate. Consider joining the Monthly Giving Club. Giving through the Club is easy and convenient for you and it provides SB&H with stable, predictable funds. Please help SB&H be there when it matters most. Thank you!