April 2019, we found out we were expecting our third baby; we were over the moon and looking forward to adding to our beautiful family. June 2019, I went to Karma Clinic for my ultrasound, and they found marks on the ultrasound that showed abnormalities to the
We were referred to McMaster Children's Hospital in Hamilton for a high-risk pregnancy ultrasound and to meet with the genetics team. The genetics team told us to be prepared for the worse, but after blood work, the genetic testing came out low for chromosome abnormalities. Further testing was done, and our daughter Otylia was diagnosed with Arnold Chiari malformation/lumber open Myelomeningocele ( L4/L5), mild hydrocephalus, horseshoe kidney, bilateral clubfoot, vertebral anomalies and thoracic scoliosis. At McMaster Children's Hospital, we met with a wonderful doctor, Dr. Stephanie Winsor, who would be my high-risk pregnancy Gynecologist. Dr. Winsor followed my case extremely closely with frequent ultrasounds, blood work and check-ups. After an MRI was requested to look more deeply into Otylia's abnormalities, we found out that I had placenta percreta. The placenta was attached to my bladder. This changed the original plan for delivery. Over a period of a few months, we met with a neonatology team, urology, neurosurgery to discuss the plan for delivery.
Monday, November 18th, 2019, Otylia was born at 34 weeks and four days by C-Section. At birth, they discovered Otylia had complications with her intestine. She was rushed into surgery a few hours after birth to repair her myelomeningocele and for a colostomy procedure. She spent 21 days in the NICU and was discharged earlier than expected. Otylia has gone through casting for her feet, had a bilateral tenotomy in February for her clubfeet and is currently in boots and bars.
In April, Otylia underwent an endoscopic third ventriculostomy ( ETV); which is a surgical procedure for the treatment of hydrocephalus. She is closely monitored by her neurosurgery team, orthopedic and urology specialists, pediatric surgery specialists and pediatrician.
At five months old, Otylia is a very happy, easy-going baby who never stops smiling and loves to listen to her big sisters reading or singing to her. This summer, Otylia will be undergoing a reversal surgery of her colostomy when she will be graduating to night ware for the boots and bars and will begin physiotherapy. We are also looking forward to starting treatment at the spina bifida clinic at McMaster Children's Hospital.
Update on Otylia:
After a difficult two years with many surgeries and hospital stays, life is finally getting a little normal for our little girl.
Otylia is a happy 2-year-old who is learning to stand and cruise around the table with the support of her KAFO braces. She loves to ride around in her bellas bumbas wheelchair or bum shuffle around the house. Otylia is always smiling, being silly, giving us hugs and kisses. She loves to repeat everything everyone is saying. Otylia loves to sing "3 little kittens" or "let it go". She likes to play the piano with her big sisters. Otylia is truly a blessing for our family.
Otylia is looking forward to this summer as she will be getting her first big girl wheelchair, which will help her be more independent and be able to keep up with her sisters.