We were anticipating the arrival of our baby. We had received a good report from the 12-week ultrasound. At 18 weeks at a routine doctor appointment, I was told that something was unusual with my blood work, that they had previously done. We were referred to London Health Sciences Centre (LHSC). 5 days later we had an early morning appointment. Navigating our way around a hospital we didn't know, they did a detailed ultrasound. Following that we met with a team of doctors. We were told that our baby has spina bifida and hydrocephalus. I still remember the room, how time stood still. It was a rough day. But we knew that God had a good plan for this baby.
This was the beginning of many ultrasounds and appointments. In many ways, the pregnancy was typical but considered high risk due to our baby's needs. Mya was born at 37 weeks, by a scheduled C-section. There was concern that she had stopped growing in utero. But she came out at 6lb. 3oz. 19.5inches long. She was perfect.
The NICU (Neonatal Intensive Care Unit) team was waiting for her. She was stable and doing very well. At 2 days old, she had a 6.5-hour surgery to repair her myelomeningocele. It was difficult to watch our baby rolled off with the neurosurgery team but she came through that amazingly well. As the hydrocephalus was being monitored, it became evident that the fluid was collecting. At 5 days old she was back in the OR to have a VP (ventriculoperitoneal) shunt placed. Again she came out of surgery well. She needed time to heal and for us to learn her care and routines. At 15 days old she was discharged. It felt amazing to bring her home.
At the start, we worked hard to get Mya to feed well. She had been fed with a feeding tube a lot during her hospital stay. It was a learning curve for all of us. At 3 months we started with Kids Ability, a lot of physiotherapies, some occupational therapy. We have a family friend who does physiotherapy with Mya 4 mornings a week. At 6 months she got her glasses. Then around 12 months, she had eye surgery, which has been a success for her. She learned to sit at 14 months. At 16 months she started wheeling herself around in her Rifton stander. This gave her independence, which she loved. She was so little she couldn't see over the top well, so her therapist built it up 2 inches. She wears her AFOs (ankle-foot orthosis) when she is in the stander. Mya also does a belly crawl to get around.
From the start, Mya has been considered low muscle tone. With spina bifida, it's expected in her lower body, but she struggles with it in her torso and arms as well. This has now developed into scoliosis. Since she can't hold herself upright, she was referred to Genetics to see if there is a reason for her overall low tone.
At 12 months Mya was considered typical in height and weight. By 2 years she wasn't making any changes in growth. We tried high-fat foods, working with a dietitian, nothing really helped. Her pediatrician did blood work and referred her to endocrinology. Following some tests, she was diagnosed with growth hormone deficiency. This occasionally happens in children with spina bifida. A few months before she turned 3, she started on a growth hormone. It's an injection she needs daily. She has started to grow again, her teeth are stronger, and she has as well increased energy.
Mya's wheelchair was ready in May of 2020. She was delighted. Took to it right away. It's been her best piece of equipment so far. She is in the middle of getting fitted for a modelled seat. With her scoliosis, she needs a perfect fit to prevent it from progressing.
Mya struggles with continence. We have a care routine to help her with this. She is also prone to urinary tract infections.
Spina bifida clinic continues to follow Mya where she has neurosurgery, orthopedic, urology, and endocrinology support. Mya has routine MRIs to check her VP shunt, her scoliosis, and to check for a tethered cord. They also keep an eye on her Chiari malformation and are trying to solve the mystery why her feet are turning in.
Mya is a big blessing to our family. She has made our world bigger. Taught us to love deeper. To take time for the small things.
She is a gift. We are grateful to be her family. Some days are harder then others. We get tired and need to refocus. But we would do this wild ride all over again.
Fun facts about Mya...
- She is full of questions.
- Painting is her favorite pastime.
- She loves to go places, the park, the library, the grocery store and the post office.
- She loves the beach and sand.
- Loves her friends.
- Loves to eat treats. Even chocolate chips from the pantry.
We are grateful to Sharon, and everyone at the Guelph Wish Fund for Children. It is a definite gift to Mya and our family. We have taken a vacation as a family. We look forward to more as Mya gets older. With appreciation.
-Kristen and Titus.