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Janaya


Boone

When I was 19 weeks pregnant with our second daughter, we went for our routine anatomy scan. During the scan, I was diagnosed with placenta previa, but the baby was given a perfect bill of health. Two weeks later, I had a significant bleed and was sent for an emergency ultrasound to make sure the baby was OK. As it turns out, this diagnosis of placenta previa was a blessing in disguise because it was in that emergency ultrasound that the technician noticed an abnormality in the shape of our daughter's brain. The doctor called our midwife, who called me and told me to get my husband and sit down together for this phone call. She said they didn't have any answers yet, but that they suspected something called Chiari II Malformation. It felt like our world came crashing down around us. We were called to McMaster the next day for a full diagnostic ultrasound and to meet with the specialists. It was there that we were told our baby had Spina Bifida. Her official diagnosis was Myelomeningocele, Chiari II Malformation, and Hydrocephalus. They didn't know if she would walk, toilet on her own, or even have full cognitive abilities, and offered us termination. Despite telling them we would not terminate, we were continually offered this option at most of our appointments following diagnosis. This made it so much more difficult to enjoy the blessing of this new life, but we found a support network and persevered. We pursued the option of fetal surgery but did not qualify.


Janaya was born 9 weeks early at 31w3d due to the placenta previa. She weighed 3lb 7oz when she was born, which is a good size for a 31-weeker! She had surgery at 22 hours old to repair her spine and was discharged from the NICU after 50 days. Janaya's hydrocephalus became symptomatic at 6 months old and required surgery to place a VP shunt (a tube draining excess fluid from the brain into the abdomen). Since then, she has been thriving. Just before her third birthday, she began to walk independently, although she still uses her walker when we are out of the house. Now at almost 4 years old, Janaya is determined to learn how to jump; she can run (although not quite as fast as other kids her age), and loves to do tricks with her walker. She does struggle with incontinence and is on daily routines for the management of both her bladder and bowels. She will likely require major surgery when she is older in order to achieve continence, but for now, we are enjoying stable health, even though it looks different.


Janaya has taught us such perseverance in her short life, and we are so thankful for the opportunity we have been given to raise her and to encourage and support her independence in a world that is not built for people with disabilities. The Guelph Wish Fund has already granted several wishes for Janaya, including a specialized chair when her gross motor skills were delayed so that she could participate in activities with our family, a playset in our backyard with a staircase custom built so that she can climb and play, and a few family trips when things have become overwhelming. Being able to step away as a family, spend that time focussing on our relationships with each other and forgetting about all the medical "stuff" for a few days has been such a welcome reprieve, and we are so thankful.


The Hofsink Family


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