This June, the Ontario Fetal Centre (OFC) celebrates the fifth anniversary of the first in-utero surgery in Canada to treat spina bifida. This condition affects approximately 120-150 babies in Canada each year. It is caused when the spinal column fails to close early in fetal development, causing permanent damage to the baby’s spinal cord and nervous system.
To honor the fifth anniversary, we caught up with Romeila Son, the patient of the very first spina bifida repair in Canada.
It has been five years since your spina bifida repair, and Eiko is turning five this August. What has it been like to see her grow up in the last five years?
While Eiko was undergoing many tests during her stay in the Neonatal Intensive Care Unit, we did not yet know the extent of her capabilities. Thankfully her spine was healing, and each test she passed was a weight lifted off our shoulders.
Eiko has worked hard in and out of therapy appointments to walk. She took a little longer to walk, but she was determined. When she did, oh boy did we cry tears. She wanted to walk and bike everywhere. Soon she was running and scoring soccer goals against her brother. We get so excited when she shows us what else she can do.
Do we still have fears? Absolutely. Not every day is easy. Not every day is exciting. Some days are hard. Those days just don’t break her spirit. She’s the brave one. Being able to celebrate the five year anniversary of her surgery is such a blessing.
What are some of her favourite activities?
She loves playing soccer, swimming, riding her bike and dancing with her brother. These are all the things that, at one point, I didn’t know if she would be able to do.
Eiko is twice born, the first time during fetal surgery and the second time during her actual birth. Her favourite part is the extra cake and being able to blow out candles on two occasions. My favourite part is remembering that day. Remembering how I felt, what was going through my head and how much I prayed. Now I’m here with her five years later, in such awe and gratitude.
What advice would you give to families who may be experiencing the same situation?
Many newly diagnosed families face huge life-changing decisions. There are two voices that are important for them to hear at this point. The first is to hear from the team at OFC. As a parent, we want the best for our child, and we in Canada are so lucky to have access to this incredibly talented team.
The next voice that is important for them to hear are the families currently living with spina bifida. Connecting with these families is like taking a sneak peek of what their lives might look like. Each situation will be a little different, but these families are a wealth of knowledge, a community of love and support and a source of hope and strength.
Ultimately, only they can decide what’s right for their family. I’d want them to know that I have no regrets. I’m so grateful for the opportunity to have had this surgery for Eiko. She brings so much joy to those around her.
Following Romeila’s procedure in 2017, funding for the OFC was announced. Since then, the team has completed 40 spina bifida repairs to-date, treating patients from across Canada. To learn more about spina bifida repair, visit the OFC website.
The Ontario Fetal Centre was established in 2018 as a partnership between Mount Sinai Hospital and The Hospital for Sick Children.