Life With Spina Bifida
Life with spina bifida is beautiful. Here are a few of our stories.
Life with spina bifida is beautiful. Here are a few of our stories.
In 2017, I got pregnant with our first child after about a year of trying. At 22 weeks, we were told to come in for some additional ultrasounds. At first, I was excited to see the baby again, as I loved getting to hear the heartbeat and see our little bean. But then I started putting some things together.
In July 2009 I sat in a doctor’s office, 22 weeks pregnant, and was told that my unborn son had spina bifida. I knew in very general terms what spina bifida was but didn’t know anyone with it or what to expect, other than what the doctor was telling me; just an abstract concept of how difficult life with spina bifida would be.
In late November 2017, we were excited to learn the sex of baby number four. The whole family was coming to the appointment. During the appointment, it became clear something was wrong. After more scans, we were instructed to call our midwife for the results. My heart sank into my stomach.
I’ll never forget diagnosis day. Sitting in the ultrasound room listening to the radiologist talk as if he was talking to someone else. He couldn’t really be suggesting there was something so medically wrong that termination was the best option for us. He couldn’t be talking about our child, right?
After almost 2 years of trying to conceive, including a miscarriage and several unsuccessful fertility treatments, we were overjoyed to learn we were expecting twins.
My 20-week ultrasound was supposed to be just another routine appointment. We already knew the sex of the baby from early genetic testing, which also told us the baby was “healthy.” So I sat there blissfully unaware that anything was wrong as the ultrasound went on longer than expected.
With 4 boys at home, we were excited to learn that baby number 5 would be a girl! At 20 weeks things were finally getting better. The morning sickness was under control and my energy had returned. I was headed to my OB appointment, 4 days after my ultrasound, when I got a call in the car. I was told to head to Sunnybrook Hospital as they were able to squeeze me in for an emergency appointment.
Links to trusted sources of information.
This is the only place in Canada offering prenatal surgery for myelomeningocele.
First published study of prenatal versus postnatal repair of myelomeningocele.