The Robertson Family Story – SBCAN

The Robertson Family Story

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. My OB called me from his personal cell phone after regular business hours, and the ultrasound was scheduled with a specialist in our area a few days later. I knew something was off and immediately started the late-night Google. My search prepared me for 3 potential outcomes, and that day we were told that the baby had spina bifida. They weren’t sure of the lesion level, but they could induce my pregnancy that day…… um what?!? We were told we would have a child with no quality of life who would need lots of support. We immediately left this specialist’s office and went to our OBGYN, who referred us to Mount Sinai’s Special Pregnancy Program.

Thankfully for us, my husband grew up with a wonderful girl with spina bifida, who has an amazing life so we knew we would be continuing the pregnancy. We learned about open fetal surgery and were overjoyed to learn we qualified for the surgery. On November 22, 2017, at 25 weeks and 6 days, we went in for surgery. It was probably the scariest thing I have ever done in my life. I had many unexpected complications. I was in between the labour and delivery and antenatal units for 2 weeks. I had DOWN days. I remember calling my husband crying because I felt like I could not be poked and prodded anymore. I felt like my condition wasn’t improving and that I would be stuck in bed forever! I cried a senseless number of tears not knowing if this was the right path for my family. My husband, feeling helpless and pretty far away, immediately emailed our fetal surgeon who came to chat with me and tell me everything was going to be okay. And you know what … it was! I just needed to hear it from him. (It’s funny how our mental health works). Fast forward approximately 10 weeks (36 weeks + 4 days) and we had a pretty easy C-section delivery. By this time, I knew every nurse in the unit and my surgeon was able to deliver our SON! We spent 2 weeks in the NICU for late term preemie issues before going home. The NICU was not my favourite experience in the world. It was very draining, but the support we had was amazing. Today my son is thriving! He is always laughing and getting into things. He loves all animals and music and makes friends everywhere he goes. While he has spina bifida, it is not something that consumes us anymore.