Zayn’s Story, by his mum, Uzma
In 2014, my husband and I had been exploring options of IVF PGD (Pre-Implantation Genetic Diagnosis).The reason for this was that our eldest son was born with a condition called Treacher Collins Syndrome, and the severity and variation of this cannot always be known until the child is born. I was told, after his birth, that any future children we had would have a 50/50 chance of inheriting this condition.
After speaking, at length, to various Doctors about IVF PGD and the risks associated with this invasive procedure, we decided not to go ahead with this, and lo and behold, 2 weeks after this decision, I saw two beautiful lines on my pregnancy test! We were so happy! Our son, Zidaan, would now have a sibling!10 weeks into the pregnancy I noticed I was getting a bump, so I went to hospital to have a scan as I was having pain in my abdomen. The sonographer congratulated me on my twin pregnancy, and I went home ecstatic! Two weeks later, I had a small amount of blood appear so went for another scan. I was told one of my babies on the scan didn’t have a heartbeat. Holding back tears, I thought, “At least one baby is ok?!”The sonographer looked worried. She called in an assistant. The surviving baby had fluid on its spine – a sign of a genetic anomaly.
I was referred to foetal medicine at my local hospital and after various tests, we discovered that my beautiful baby had not just inherited Treacher Collins Syndrome, but also had a diagnosis of Down Syndrome, as well. I felt so lost! “Why my baby?” I thought… But then I had faith that this baby will be loved no matter what. He is not a diagnosis! He is my beautiful boy! I was 22 weeks pregnant when I told family about his condition, as I didn’t want it to be a shock when he was born, but rather wanted to celebrate the birth of my beautiful miracle boy.
I was met with complete disregard by family, who told me to have a termination, as having another child with additional needs would bring shame to the family! I walked away from the family, who had no idea of the beautiful bond I had now formed with this living heartbeat that was growing inside me. I walked away upset and alone, but with my head held high knowing that, come what may, my husband and I would face this together. The fact that he had a disability seemed like open access for some people to give me unwanted advice on how I shouldn’t give birth to this ‘poor child’!
I had Zayn at 35 weeks and 3 days. The doctors offered me a termination, in hospital, when I was 35 weeks! They told me he would have “formidable health problems” and I should really give it “some thought”! The day my beautiful boy Zayn was born, surgeons battled for hours on the operating table. Due to the Treacher Collin’s Syndrome, Zayn’s airways were small and, due to the Down Syndrome, his tongue was wide. Both conditions were working against each other!
They gave him a tracheostomy (tubed airway) at birth. When they wheeled him out, I instantly fell in love all over again with this bundle of joy, with the biggest fighting spirit! We stayed in hospital for 10.5 months, as Zayn had many surgeries. The result of both his syndromes left him with craniofacial issues and problems with his breathing. We went home with him on ventilation, and welcomed our beautiful boy into our home! Zayn went through so many surgeries and invasive procedures, but he always smiled and spread the warmth of his spirit to all those that were honoured to be in his company. I cannot express the sheer adoration I had for my gorgeous cheeky boy, who loved blowing raspberries and spending time with beautiful ladies!
We embraced the stares we got in public, with pride, and smiled back. You would be surprised how many stares turned into warmth, and people would come and say, “Hello”! He enjoyed being outdoors, listening to music and attending school. We attended his school Christmas Fayre on 7th December 2019 and Zayn beamed at everyone that came up to him to say, “Hi!” The following day, Zayn was admitted into hospital with a high temperature. He had contracted a virus. Zayn’s breathing become more laboured each day and although he was on CPAP ventilation at home, this was no longer working in hospital. They put him on a Dreger support system, but still his breathing was laboured. Finally, they tried nitric oxide. Zayn smiled so much. He was feeling better! But the nitric oxide led to Pulmonary hypertension. On the 27 December 2019, my beautiful Angel Zayn left this world…
Zayn was a real bundle of joy, and touched so many people lives despite the trials he faced. I can say he had a good quality of life for the short 4 1/2 years he was with us. And he was loved beyond words. People need to look beyond these old fashion prejudices against disabilities and open their hearts and minds to the differences that make our children so beautiful. We have to wipe away this fear of the unknown from our society…Zayn left behind a legacy of smiles, determination, inclusion, broken taboos, warmth and love.
Love you so much Zayney x x