Broxburn dad pays tribute to baby son as he gears up for epic cycle challenge in his memory
Mourad Senouci and his wife Ashley, from Broxburn, were excited to learn during lockdown that they were soon to become parents again. Their daughters Sofia, 5, and Hanna, 3, were over the moon that they were going to have a brother.
But joy turned to sadness and worry at Ashley’s 20 weeks scan when it was revealed that their unborn baby had a congenital heart defect (CHD).
Then tests detected their little boy had nine heart defects, something said doctors was rare.
Mr Senouci said: “Our world came crashing down. We were told that as well as these nine defects, our baby’s tiny stomach was on the wrong side and that he had a separate condition. We were informed that each of the conditions were serious and to have them all in one child was very rare.”
“His heart was the size of a thumbnail. It was that small. They couldn’t tell us what could be done. It was a case of wait and see. It kept coming back to that. It was so frustrating. We just tried to hold on to any little bit of hope we had.”
Zakariya, Zaki for short, was born on 4 September weighing in at just 6lbs 11oz. The couple were overjoyed to meet their beautiful son at last but only had time to give him a quick cuddle before he was taken away for treatment.
The 32-year-old said: “It was surreal. He would cry, be comforted and changed like any baby. We had to keep reminding ourselves that if he wasn’t incubated with all the wires he wouldn’t survive. It was so hard, not having answers.”
The tot spent seven days in the hospital’s neonatal intensive care unit where he was dependent on a drip and medication to help keep a duct in his heart open. Ashley had been closely monitored by the cardiac team at Queen Elizabeth University Hospital.
Ashley, 33, said: “The unit became our home for those seven long days. There were X-rays, heart scans, blood tests, as well as the challenging task of changing Zaki’s nappy through the hand holes of an incubator. Zaki was doing well, and in so many ways looked just like a wee baby laying there for that week, apart from the many wires and sensors attached to him.”
They were soon given devastating news from the cardiologists that they couldn’t do anything more for him.
The dad of two added: “I remember when the nurse gave us the nod that they were ready to chat to us. That walk to the room was like walking all the way around the world.
“Through the week they had done MRI scans. They said they had been discussing options for surgery but due to the complexity they felt there was nothing left that could be done. Even if by some miracle he survived he wouldn’t have a good quality of life. We were devastated and broke down. It was so hard to accept we couldn’t take him home, ever.”
“The team explained the decision. They said it would be a miracle if he survived, he needed around four aggressive surgeries and each one was very high risk.
“Though we knew it was severe way back at the 20-week scan, it was extremely painful to hear. We had just met our baby and now we would have to begin saying goodbye. They were great with us and let us hold him a lot.”
A baby is born with a serious heart condition every two hours in the UK and despite congenital heart disease being one of the biggest killers of infants, only around half of congenital heart defects are picked up during routine prenatal scanning.
As the family spends time together over Christmas Mr Senouci said he will be thinking of his son. “I’ll always remember Zaki, it’s especially hard at this time of year. And when it’s still so raw for us. But we will remember him forever as a calm and content baby. He was my son and I loved him entirely.”
Mr Senouci, an engineer, said the whole experience was made even harder, due to the impacts of covid-19. “The whole thing has been tough with all the restrictions. Ashley had to go to the appointments by herself. I wanted to be there for her. And we are still waiting on bereavement counselling now. But the staff at the hospital and Robyn House were very supportive and we are so grateful to them.”
He plans to complete the epic 516-mile epic challenge over five days in March 2021 and will be riding solo and wild camping each night to raise cash for charities Tiny Tickers and Children’s Hospice Association Scotland (CHAS).
CHAS provided care for Zaki after he was born allowing Mourad and his Ashley to spend precious time with him at Robin House in Balloch, right up until he passed away.
He said: “I have been blown away by the support so far. I need to do this to have some time to process everything myself. To think of Zaki. And I want to help raise awareness of heart defects in babies. And hope that by doing this other families out there will know that they are not alone.”