A Mother’s Unwavering Love: Samia Hussain’s Journey with Muhammad Abdullah Ali

Introduction

Parenthood is often unpredictable, but for Samia Hussain, the journey took an unexpected turn when her son, Muhammad Abdullah Ali, was diagnosed with full trisomy 13. Though the path was filled with uncertainty, fear, and unexpected challenges, it also brought immense love, resilience, and a deep connection to a supportive community. Samia’s story is one of strength and advocacy as she navigates the unique experience of raising a child with trisomy 13.

A Diagnosis That Changed Everything

During her pregnancy, Samia received life-changing news—Muhammad had a major heart condition along with other complications. The diagnosis was overwhelming and frightening, but despite the uncertainties, she remained hopeful. She clung to the belief that her son would be okay, holding onto every bit of positivity as she awaited his arrival.

“In pregnancy we were told Muhammad had a major heart defect called pulmonary Aterisia with VSD. They did believe he would be born with a genetic condition however I had refused all testing and kept faith hoping the docs were wrong. Unfortunately he was diagnosed with Full trisomy 13 a week after his birth. I felt like the earth beneath my feet had come out.” She explained.

The Day Muhammad Was Born

Samia had envisioned a future where her son would defy the odds. When Muhammad was born, she was overcome with love, but also uncertainty. The medical team worked swiftly to assess his condition, and the first few moments were filled with both joy and anxiety. As she held her baby for the first time, Samia knew that every moment with him would be precious, regardless of the challenges that lay ahead.

“I really thought he would be OK. When he was born they saw issues with his head called curtis aplasia and 6 fingers plus his eyes were closed and obviously the heart defect. I still felt this was just a bad dream until they sat us down and explained it seems like a life limiting condition and would need to be sent off for genetic testing. I was speechless and numb.”

Navigating the Trisomy Journey

Muhammad’s diagnosis wasn’t confirmed until after birth, making the early days a blur of emotions, medical interventions, and unanswered questions. The hardest part for Samia was not knowing what the future held for her son. 

“We didn’t get the diagnosis till after birth so it was a big shock because I did not have a clue what these trisomies are. I had never come across it. Our heads were all over the place and the challenges we had to face was the fact his diagnosis changed what was planned for him after birth. All interventions were declined and I was told it is a life limiting condition and he wouldn’t live long. He was incompatible with life.”

Yet, amidst the fears, there were also triumphs—small victories that meant the world to her. Each moment spent with Muhammad, every milestone he reached, no matter how small, was a testament to his strength and determination.

Finding Strength in Community

In the hospital, Samia was unaware of the support groups available for parents facing similar journeys. It wasn’t until later that she discovered SOFT (Support Organization for Trisomy) and other networks of parents who truly understood what she was going through. 

“At that time in hospital I didn’t realize there was so much help available. I managed to get in touch with other parents who have had t13 babies and could see that they were thriving if the right care was given. Unfortunately my hospital was not trisomy friendly.” This community became a lifeline—offering comfort, guidance, and reassurance that she was not alone. The stories of other parents, the shared experiences, and the collective strength of the community gave her the courage to keep moving forward.

A Message to Other Parents

Looking back, Samia wishes she had known about the resources and support available from the very beginning. 

“I wish I had known about the Soft group and all other trisomy groups. I wish I had known that interventions can be done and not let the docs use the ‘ incompatible with life’ Tag. There is so much out there to help these beautiful kids. The knowledge I learned now I wish I had known before. I still am glad I didn’t get any testing beforehand and would do it all over again just to have those beautiful moments with my baby rather than let docs pressure us to make other decisions.”

Her message to other parents facing a trisomy diagnosis is simple but powerful: You are not alone. There is a wealth of support and love in the community, and no matter how difficult the journey may seem, there is always hope. The love you have for your child, the moments you share, and the resilience you build will shape your journey in ways you never imagined.

Closing Thoughts

Samia Hussain’s story is one of love, perseverance, and the strength that comes from embracing the unexpected. While the road has been challenging, it has also been filled with profound moments of connection and growth. Through her journey with Muhammad, she has found not only the strength within herself but also the unwavering support of a community that stands beside her. Her story serves as a beacon of hope for others navigating the trisomy path, reminding them that they are never truly alone.