Finding Strength Through Love: Heidi Murphy and Sajjona’s Journey

Introduction

A trisomy diagnosis brings an unexpected journey—one filled with fear, uncertainty, and ultimately, deep love. Heidi Murphy’s story with her daughter, Sajjona Murphy, is a testament to resilience, advocacy, and finding joy despite the unknowns. Though her daughter’s genetic diagnosis is still unfolding, Heidi has faced the trisomy journey head-on, proving that a child’s life is not defined by a medical label, but by the love and care they receive.

The Heartbreak of the Diagnosis

Like many parents, Heidi and her family were heartbroken and scared when they first received the news. The unknowns surrounding Sajjona’s condition created an overwhelming wave of emotions—uncertainty about her future, worries about medical challenges, and the fear that came with navigating this new reality. But despite the fear, Heidi knew one thing: Sajjona was her daughter, and she would fight for her every step of the way.

“We are getting genetics done in the spring so we are unsure at the moment.”

An Unexpected Birth Experience

When Heidi went into labor, she envisioned a natural delivery, welcoming Sajjona into the world in the most traditional way. However, things did not go as planned. Instead of the birth she had imagined, reality was filled with unexpected medical interventions, a whirlwind of emotions, and the realization that their journey would be anything but ordinary.

“We went into labor with the idea of natural labor. However, we ended up having an emergency c section due to a condition called handles ring where my uterus contracted and would not allow Sajjona to be born. Because we had a written birth plan and did not have a diagnosis before she was born we believe her life was saved.”

Despite the challenges of those first moments, nothing could overshadow the love she felt for her daughter. Sajjona was here, she was beautiful, and she was worthy of every effort to ensure she had the best possible life.

Overcoming Negativity and Finding Strength

As many trisomy parents experience, Heidi and her family were met with skepticism and discouragement from the medical community. Doctors and professionals often focused on what Sajjona might not achieve, what difficulties she might face, and the uncertain timeline of her life. But rather than succumbing to negativity, Heidi chose a different path—she decided to focus on Sajjona’s strengths, possibilities, and the joy she brought to their lives.

“Whereas all their negativity kept coming at us we kept our faith and allowed God to lead us through this journey. However, 1 month turned to 2 months and 6 month to a year now Sajjona is 7 years old! Sajjona struggled the first year of her life because later we found out she had obstructive sleep apnea and needed a ventilator with bipap settings which saved her life. Advocating for Full code and trusting our instincts has really helped us in caring for Sajjona. We almost lost her in 2018 before the bipap when she contracted rsv it was awful the hospital wanted us to let her die but the medflight team listened and saved her. Sajjona has proven to everyone she is her own person and can use her hands well, can walk in a gait Trainor, say some words and has high receptive “understanding@ of language. We have put those past thoughts out of our mind and believe Sajjoba can do anything even though it is done in her own unique way. She shows love through her touch a hug or smile no words needed.”

As time went on, her perspective evolved. She learned that no one—not even medical experts—could predict the future. Every child is unique, and every moment with Sajjona was a reminder that life is about cherishing the present rather than worrying about the unknown.

The People Who Made a Difference

Throughout their journey, Heidi and her family found guidance and reassurance in the medical professionals who truly cared. One of the most impactful figures in their journey was their complex care doctor, who, before retiring, provided unwavering support, guidance, and compassion. Having someone in the medical field who believed in Sajjona, who advocated for her, and who treated her with dignity made a significant difference in their experience.

“She has now retired but our complex care Dr saved her life and got her the ventilator she needed. Connecting with other families through sift, simonslaw and rare trisomy groups so you can feel like your life is “typical” of that of a medical family. Our church community, Easter seals, therapists.”

Beyond medical professionals, the trisomy community became a source of comfort and solidarity. Connecting with other parents who had walked similar paths reinforced that they were not alone—that there were people who understood the highs and lows of the journey and who could offer hope when times were tough.

A Message to Other Parents

For parents who have just received a trisomy diagnosis, Heidi shares this profound realization: No one knows how long anyone’s life will be. While medical professionals can provide insights, they cannot predict the moments of joy, strength, and love that a trisomy child will bring into a family. She encourages parents to embrace their child’s life, celebrate their existence, and reject fear-driven narratives that try to define what is possible.

“That we simply don’t know how long anyone’s life is regardless of a trisomy diagnosis. Treasure each and every day! Always go on adventures, explore and do it the way that is special and unique as your family.”

Conclusion

Heidi Murphy’s journey with Sajjona is one of love, determination, and unwavering belief in her daughter’s worth. Through medical challenges, skepticism, and uncertainty, she has remained steadfast in her commitment to giving Sajjona the best life possible. Her story is a reminder to all trisomy parents that while the journey may not be what they expected, it is one filled with extraordinary moments of love, resilience, and hope.