Hello, my name is Tera and I am the mother of three beautiful girls. This is the story of my second daughter, Amaya.
By Tera Gangoo and Michelle McClure
When I was 32 weeks into my pregnancy, the obstetrician became concerned that even though I was putting on weight between check-ups, my stomach was not growing in relation to the gestational age of the fetus. On her recommendation, as a precaution, I started having ultrasound scans on every subsequent visit. Weeks passed and everything seemed fine—there was no major cause for concern.
Then, at my very last appointment in May 2010, the obstetrician told me there were some abnormal readings on my last ultrasound and that she wanted to do another scan to confirm her suspicions.
The ultrasound showed a mass at the back of the fetus’s head. The doctors thought it was a tumour and referred me to Mount Sinai Hospital for an MRI that weekend. The baby had other plans, however, as I went into labor the day before the scan was due.
At 12:07 am Amaya, our little miracle, was born. She was immediately taken by the resident paediatric physician for a complete check-up. Amaya didn’t cry in her first few minutes of life—a time that seemed like an eternity. She was then wrapped up and given to me for the first time. I can’t remember ever being so scared yet so content; it felt like the tail-end of a storm. That feeling was truly inaccurate, however, as that day was just the beginning of a very challenging but extremely rewarding journey.
The start of our journey
Amaya was prepared for medical transport to The Hospital for Sick Children, where she was admitted to the neonatal intensive care unit. The team at Sick Kids ran various tests on Amaya, from blood work to an angiogram—too many to list. Seven days later, the final test was an MRI to determine if there was a substance to the mass or whether it was fluid. The results finally showed that Amaya had a bleed in the cerebellum of her brain, although the root cause of the bleed would forever remain a mystery. Because of where the bleed was located, Amaya was expected to experience damage to her gross motor skills and permanent impairment of cognition, speech and balance.
Amaya has undergone therapy since the age of 5 months old. She was formally diagnosed with cerebral palsy in December 2011, and we have strived to give her whatever she needs to overcome her challenges. In February 2013, she took her first steps! Now, at the age of four years, she still needs help with walking outdoors, on stairs or on uneven surfaces.
Amaya has received every therapy available in Canada. In spring 2013, her paediatrician recommended assessment for autism spectrum disorder (ASD). I fought the doctor, thinking it wasn’t necessary. “Amaya will talk,” I said. As it turned out, Amaya was diagnosed with ASD in January of this year.
In 2013, before Amaya was diagnosed with ASD, I heard about Ability Online—an incredible resource and network of support for the parents of children like Amaya, as well as for the children themselves. It triggered an outpouring of emotions. I felt happiness, as I accessed the site and read what Michelle McClure (Ability Online’s executive director) and her team are doing for so many families. Their relief efforts for children with special needs are endless. I also felt hope, just from knowing that there are others out there with stories similar to mine, people who can understand the numbness such a situation creates. Ability Online has made our journey a little easier, and I have made some wonderful friends along the way.
Our miracle baby has just celebrated her fourth birthday and she is very healthy, apart from her obvious challenges. Both Amaya and her therapists are working diligently, and continued support from family and friends makes it possible to get through each day. Amaya enjoys the outdoors, the park, slides and flowers. She is a happy, fun child who loves to cuddle. Her words are sporadic and seldom spontaneous, so we will continue with intensive behavioural intervention, conductive education, speech therapy, PLASP social groups, physiotherapy, therapeutic swimming and dance classes.
Amaya’s determination, courage and strength are helping her to overcome her battles. She is truly an inspiration to us and to her sisters. As a family, we hope and pray every day that our support, and Amaya’s strong character, will eventually allow her brain to make new connections where old ones no longer exist.
Tera Gangoo is the mother of Amaya. She works fulltime, juggles activities and therapy sessions. She has begun to include more volunteering and work life balance, and accepted every opportunity to give back to her community.