A Mother’s Gift: Betty Rae and Pamela’s Trisomy 18 Journey

Introduction

Life has a way of presenting unexpected turns, but sometimes, those turns lead to the greatest gifts. Betty Rae’s journey with her daughter, Pamela Rae, who was diagnosed with Full Trisomy 18, is a testament to the beauty of love, resilience, and unwavering devotion. Through challenges and triumphs, Betty’s story offers hope, wisdom, and encouragement to parents navigating similar paths.

An Unexpected Diagnosis

Unlike many parents who learn of their child’s diagnosis during pregnancy, Betty did not know that Pamela had Trisomy 18 until the day after she was born. The news came unexpectedly, and like any mother, she was met with a wave of emotions. But as she looked at her beautiful baby girl, she knew one thing for sure—Pamela was a gift, and she would cherish every moment they had together.

“I did not know the diagnosis until the next day after she was born. I was by myself at Children’s Hospital and I cried for about an hour. It wasn’t the diagnosis that I feared or cried about, it was that they said she would not live past two weeks and were sending her home for comfort care.”

A Mother’s Love from the Start

Pamela was Betty’s fifth child, and her birth was filled with the same joy and excitement as her previous children. Betty had always loved the experience of bringing life into the world, and with Pamela, that love was no different. However, the journey ahead was unlike any she had experienced before. The unknowns of Trisomy 18 loomed over her, but she was determined to give Pamela all the love and care she deserved.

“The difference here was that they whipped her away right away and said there was something wrong and they would bring her back. They would not let me breast feed her as they needed to check if everything was intact. Of course as the day progressed it was different from the other births as we were both flown out to BC Children’s Hospital.”

Growth, Challenges, and the Power of Persistence

Right from the beginning, Pamela showed remarkable strength. She continued to grow, proving time and time again that she was on her own unique path. The challenges were many—medical concerns, developmental delays, and the constant need for advocacy—but Betty refused to focus solely on the struggles. Instead, she chose to see the beauty in every moment, celebrating every milestone and victory, no matter how small.

“We had an infant consultant with an organization in our community that was instrumental in getting us the support we needed. Eventually there was an online presence from a wonderful lady in Australia and now this organization. Our kids can survive and can do well with love and support. The challenges for us of course were the many appointments all out of town, continued home support now part of our daily lives, the constant advocating and keeping good records.”

Betty’s perspective on the Trisomy 18 journey evolved over time. She learned that while it was important to acknowledge the difficulties, it was even more important to embrace the joys. Pamela was not defined by her diagnosis—she was a child full of life, love, and purpose.

“Now in a group home the challenge is with staffing and the lack of people outside of her disability peers and staff having a meaningful and engaged relationship with her. Pamela, however, is always happy and it doesn’t seem to bother her so it’s a me thing. Rewards is seeing Pamela’s physical needs being taken care of, having her in our lives as she has a very charismatic personality.”

The Support that Made a Difference

Navigating life as a trisomy parent is not something anyone should do alone. For Betty, one of the most helpful resources was an infant consultant from their Infant Development Program. This support, along with a network of understanding professionals and fellow parents, made a profound difference in ensuring that Pamela had access to the care and assistance she needed.

“Infant consultant with our Infant Development Program. Being involved in the Inclusion organization locally and provincially, attending conferences and conventions. Being online with other parents, doing research and always advocating for equal treatment.”

Having a community—whether through medical professionals, support groups, or fellow trisomy families—became an essential part of Betty’s journey. Knowing she was not alone provided strength and encouragement, helping her continue advocating for Pamela’s best life.

Words of Encouragement for New Trisomy Parents

To parents who have just received a Trisomy 18 diagnosis, Betty offers a simple yet profound message: Trisomy children are a gift given to a family, not a burden. The journey may not be what you expected, but it is filled with moments of deep love and purpose. Embrace every second, celebrate the small victories, and know that you have been given something truly special.

“Trisomy children are a gift given to a family, especially to a mother. They are pure grace. Are they easy to take care of? No, but you will learn so much and treasure it all. Once they have all their medical needs taken care of; they love life, and love to learn and tease and be engaged. Regarding what I wish I had known at the start of this journey, perhaps knowing ahead of time, but it all worked out the way it was meant to be.”

Conclusion

Betty Rae’s journey with her daughter Pamela is a story of love, perseverance, and an unbreakable mother-daughter bond. Through all the challenges, she has learned that a diagnosis does not define a child—their spirit, love, and impact on those around them do. For families facing a trisomy diagnosis, Betty’s story is a reminder that while the road may be different than expected, it is one filled with extraordinary moments worth cherishing.