Johanna and Maia's Surgery Story
In October 2017 we were excited for the ultrasound to find out our baby’s sex, but in a matter of minutes everything changed. What was to be the best day of our lives became a moment of fear.
We hoped the experts at Mount Sinai would tell us the initial diagnosis was a mistake, but after a long day of tests they confirmed that Maia had spina bífida. The first treatment option that was presented was termination. I was extremely disappointed. How could I end the life of the person I was expecting with so much excitement? The person I loved from the minute I knew she was coming?
Finally, some hope came into the room. Dr. Tim Van Mieghem explained how fetal surgery might be beneficial and an option for our family. We decided to start the process to find out if we qualified to be patient number 3 in Canada for this surgery.
We qualified and the surgery was booked for November 14, 2017. On the day of the surgery it was cancelled as a cyst had grown between the spine and cerebellum. At that moment, I thought our only option had been taken from us. Once again termination was put on the table. That cyst wasn’t common in kids with spina bifida and she was only the 4th known person with this diagnosis and the other three didn‘t make it. My husband Camilo and I decided to continue with the pregnancy. We left the hospital without answers; without knowing what would be next for us.
Our beautiful daughter Maia was born on February 21, 2018.They had to close her spine from L3 to S5, and 12 days later they installed a VP shunt due to her ventricles being enlarged. After all the surgeries and ups and downs, Maia had a remarkable recovery. She brings so much love to our family. Yes, it’s difficult at times and her physical milestones are different, but she amazes us every day. She shows strength, happiness and determination. We do sometimes wonder if things would be different had she had the fetal surgery, but seeing her progress and seeing her go beyond expectations reminds me that God had a different plan for us and it was as the right plan for Maia.