“In the decade before giving birth to my first child, I struggled endlessly with my self worth and purpose. These struggles took form in anorexia nervosa, bipolar disorder, anxiety, and chronic suicidality. I spent years in and out of mental health treatment with minimal success in my recovery and attempts to find a stable and happy life.
In the spring of 2017, my husband and I found out I was pregnant with our first child. We were filled with joy and hope after a long season of relapse in my struggles with mental illness. I felt a significant push to work toward lasting recovery. I applied to a Christian residential treatment program called Mercy Canada with the hope that a therapy perspective based on my faith would make a difference for me and help me to be the mom my child needed me to be. At just 9 weeks pregnant, I moved out to Vancouver, away from my home and husband in Calgary, where I would spend the next 6 months working through my past and finding healing. After weeks and months of excruciating work, counseling, and prayer, I made it through the program. I finally felt I had hope and purpose for my life. Heading home at 33 weeks pregnant with my daughter, who would be named after my counselor, and the victory I had found, I was joyful and peaceful. I had no idea what lay around the corner.
In early January 2018, I had my 36-week appointment with my OB-GYN. Ashley’s heartbeat was good and I seemed to be gaining weight appropriately, but I was told I was measuring a bit small. I wasn’t particularly concerned. My husband hadn’t been a big baby and I was a small baby. It probably wasn’t a big deal. They decided to send me for an ultrasound just for good measure. It was at that appointment our world was shattered in one moment.
‘Something is wrong with her brain.’ The words were ringing in my ears as the doctors and ultrasound technicians continued to attempt better images of my baby. ‘What do you mean wrong?’ my brain protested. My pregnancy had been healthy up until now. The anatomy scan was clear, my vitals and numbers had all been good. I was just going for a scan because I was measuring ‘a bit small.’ Ashley had already dropped in preparation for birth and her position made it more difficult to see what was going on. All they could tell us was her ventricles were enlarged, her brain was quite small, and she could die. The doctors and technicians set up appointments for the following week for a 3D ultrasound and genetic testing.
Ashley didn’t want to wait that long. Three days later, Ashley Victory came into the world and the whirlwind had only just begun.
My brand new 4-pound, 6-ounce baby girl was immediately whisked away from me to be assessed, put on oxygen, and transported to the NICU and then to the more specialized NICU at our local children’s hospital. In the next few days, the specialists at the children’s hospital ran every test they could think of to try to diagnose our little girl. The first shocking discovery was the result of the MRI that showed significant brain damage that appeared to be the result of mini-strokes before birth. She had significant brain tissue loss, hardening of some tissue, and her cerebellum was completely gone. The team was stumped. All the tests came back negative — no infection caused her condition and initial genetic panels were all negative. They had no idea what had happened, nor could they tell us anything about what her future might look like.
After a month in the NICU, we were given the option of bringing Ashley home to be able to be around her family and see how she handled her own environment. We didn’t want our daughter to live her entire life in the hospital and we felt God had asked us to trust Him and bring her home. At 4 weeks old, our little girl came home on 24/7 oxygen and a nasogastric (NG) feeding tube. Despite these setbacks, she adjusted to home life well, especially with the care of her furry big sister, Abbie. Our adopted dog considered it her personal mission to protect this tiny baby and would often be wrapped around her and snuggling up to her. We knew we had made the right choice in bringing Ashley home, despite the significant round the clock care she required.
Life got a little more complicated when Ashley reached 3 months old and started having clinical seizures. She would get herself in a stiff posture and stop breathing for a few minutes at a time. We were told this would likely occur at some point, due to the nature of her brain damage, but we didn’t know what these seizures would look like until we had a blue baby in our arms. Ashley had her first hospital stay on a regular unit at the children’s hospital where we adjusted medications to get some control over these seizures.
Throughout the first year of Ashley’s life, we were in and out of the hospital a number of times, often due to seizures. Respiratory infections were also a common occurrence, as she had a difficult time breathing even when she wasn’t sick due to a floppy airway. Our weeks were filled with therapies and visits to most clinics at the hospital, as well as pediatric home care checkups. I don’t remember a lot of the first few months because I was so sleep deprived from her care, fighting to give her the best life that I could, and knowing we could lose her before her first birthday.
When Ashley was 5 months old, we found out that I was pregnant again with our second child. We had always talked about having our kids close together but now we were faced with the question of whether Ashley’s undiagnosed condition could reoccur. An extensive genetic panel, including bloodwork from my husband and I, was sent off to a lab in the United States because there are no genetics labs in Canada that can do the types of tests needed.
Six months later, we were given a diagnosis: Ashley had a de novo (not inherited) genetic mutation of the COL4A1 gene. The COL4A1 gene is responsible for synthesizing collagen to strengthen tissues and small blood vessels in the body. The weak blood vessels explained the mini-strokes Ashley had before birth, but we still had no prognosis for our daughter. COL4A1 mutations, recently named ‘Gould Syndrome,’ are an ‘ultra-rare’ genetic mutation with only 200-300 documented cases worldwide. We know of only four in Canada, including Ashley. There was comfort in knowing it was extremely unlikely our subsequent children would acquire this same mutation, as neither my husband nor I carried it. It still didn’t change our reality and unknown future with Ashley.
We moved forward slowly, working on physical therapy and doing our best to engage Ashley and encourage her development. There were great days and a lot of difficult days. We have prayed a lot over this child’s life — from the time we found out I was pregnant up to present. Still, with no definitive prognosis, we take each unknown step in faith — not necessarily that Ashley will live a typical life (eating by mouth, walking, talking, or going to regular school), but that she will live a joy-filled life bringing hope to all she meets and knowing we will celebrate every victory along the way.
Ashley is now 2 and a half, has spent 178 days in the hospital, had six surgeries, countless procedures, needle pokes, therapies, and tests, but she is thriving in her own way. She recently received her first wheelchair and we are SO thankful for how it allows her to interact with her world. We had originally feared the idea of a wheelchair for our daughter, as it seemed like that would be the end of progress in her mobility and the hope of a slightly ‘normal life.’ In reality, this chair is already helping her to strengthen her upper body where she’s weaker and will help her on the road to her own normal life.
A lot of our family life has involved adjusting our expectations and learning to be grateful for the gifts we have been given… For example, Ashley has been seizure-free for the last 5 months and we sing praises to God for that. Being free of the trauma of seizures has boosted Ashley’s development, giving her brain more time and space to work on her physical strength. Recently she learned how to giggle. We know it is very likely we will see seizures again, so we do our best to make the most of her days and weeks of freedom.
Ashley is full of personality, squeals when she’s happy and gives us what we call her ‘displeasure face’ when she doesn’t like something. She adores her 18-month-old sister, Natasha Grace, who loves to hug her and be close to her. She’s very interested in her stuffed dog puppet and reading stories. She lives for snuggles and has the most magical smile.
It’s hard to adequately explain the life of parenting a medically complex, special needs child, as things that often seem normal to me — administering medications multiple times a day, managing seizures, constant therapies, and appointments — are so foreign to others. The quarantine period of this current global pandemic didn’t shake us in the same way as it did others because we have often had to stay home and avoid gatherings to protect our daughter from illnesses. Throughout our little girl’s journey, we have learned to adapt as a family. Life is not going to look the way we anticipated in years past, but that does not mean it isn’t beautiful.
I know I would not be where I am, handling this life, if it had not been for the healing and victory I found over my mental illness. When I left Mercy Canada, not knowing about Ashley’s condition, I believed I had passed through the hardest season of my life. No one knows what’s around the corner but we get to choose how we face it… we chose to embrace the challenge and the fight, and we continue to find victory in our life as a family facing the unknown.”
This story was submitted to Love What Matters by Megan Moul. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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