Seeing Hope After the Fear of Sight Loss: The Family's Perspective

Born at just 23 weeks, Heyam spent the first seven months of her life in neonatal intensive care before travelling to Great Ormond Street Hospital (GOSH) for specialist eye treatment. In this interview, her parents, Fahad and Khuluod, reflect on the challenges of extreme prematurity, the devastating moment they learned she could lose her sight, and the hope they found through every small milestone.

The first seven months of Heyam's life were spent in neonatal intensive care. What do you remember most about that time?

"The first seven months in NICU felt like seven years to us as parents. Every single day was emotionally exhausting and filled with fear, hope and uncertainty.

We visited Heyam every day, fed her, listened to her tiny heartbeat, held her little hands and prayed constantly for her strength.

One of the hardest parts was watching other babies leave the NICU after just a few weeks and go home with their mothers, while our journey continued day after day. It was heartbreaking in ways that are difficult to explain. Even our family often wondered how we were surviving emotionally during that time.

As a mother, while I was at work, I would constantly call the hospital asking about every small detail: her weight, heart rate, feeding, sleeping and even what time she woke up. I carried a notebook everywhere with me and wrote down everything about her progress because every tiny change felt so important and precious.

Those seven months changed me forever. They taught me patience, faith, resilience and a kind of love that only a mother in that situation can truly understand."

Was there a moment that stands out as the most difficult?

"We still remember the moment doctors explained that her eyesight could be at risk. It felt like time stopped. After everything she had already been through, hearing those words was overwhelming and deeply painful.

As parents, the news broke our hearts. We were scared of the unknown and worried about what her future would look like. But even during those moments, we held onto our faith in Allah's mercy, hope and the belief that miracles can happen through love, care and determination."

What do you remember most about arriving at GOSH?

"Arriving at GOSH for the first time felt emotional in a completely different way. After seven months in NICU, this was a completely new chapter with an unknown journey ahead.

After such a long and difficult journey, we started to feel that we had arrived in a safe place, filled with hope, expertise and genuine care, where the treatment Heyam had received over the previous months could continue.

The kindness and reassurance from the team gave us comfort during one of the most vulnerable times in our lives. It was also the first time we had our baby in our arms since birth, with no experience and no family around us."

Looking back now, what does it mean to see Heyam growing up and thriving?

"Looking back now, seeing Heyam playing, attending nursery, enjoying life and growing step by step means more than words can describe.

We have folders on our phones where we keep her monthly photos and memories. Every time we look back at how much she has changed and progressed, it fills our hearts with gratitude and strength.

As a mother, those little milestones make me breathe easier and give me the motivation to keep going and keep giving more. Even though she is still tiny and different from other children her age, to me she is incredibly strong and inspiring."

What message would you like to share with other families facing a similar journey?

"Her journey has made me want to support and encourage other mothers going through similar experiences and remind them never to give up.

Sometimes hope grows slowly, but every small step forward is still a beautiful victory.

This journey has taught us to always be thankful and grateful to Allah. Alhamdulillah.

We are truly grateful to GOSH and everyone who was part of Heyam's journey. We hope our story can give comfort and hope to other families facing difficult moments, and remind them that even in the darkest times, there can still be light ahead."

Thank you

Our sincere thanks to Fahad and Khuluod for so generously sharing their family's journey with us. Their openness and honesty help shine a light on the realities of extreme prematurity, the challenges families can face, and the hope that specialist care can bring.

We are grateful to them for allowing us to share Heyam's story and hope their experiences offer comfort, reassurance and hope to other families navigating similar journeys.