When we finally brought her home, it was… perfect (Picture: Shahrob Mushtaq)
My eyes trained on the black and white screen, I beamed as our baby flickered into view.
My wife Arshia gripped my hand, as the sounds of a heartbeat filled the room.
‘Do you want to know the sex?’ the sonographer asked us and, after exchanging an excited look, we both nodded.
‘It’s a little girl,’ she confirmed. If it was possible, my smile got even bigger.
Of course, it wouldn’t really have mattered what the answer was – but as we already had our little boy, Haroon, at home, it just seemed extra special that our second child was a girl.
Ever since we met, Arshia and I had both been eager to become parents. Luckily, we fell pregnant easily and when Haroon was born in April 2018, he was the most relaxed, calm little baby. An easy start to parenthood.
So after a few years of loving him, we decided to try for a second child. And then we were having a girl!
I watched Arshia’s bump grow with pride as her pregnancy progressed smoothly. Then, at 39 weeks and one day, on 4 November 2022, she went into labour and Hoorain was born.
At 5lbs 7ozs, she was slightly smaller than the doctors had expected and so they kept her in for three days to do extra checks, but when we finally brought her home, it was… perfect.
As Haroon cooed over his baby sister and tried to help Arshia changing nappies and bathing her, I felt so content. ‘My family,’ I thought happily, unable to take my eyes off the three of them.
I couldn’t wait to start enjoying life as a four (Picture: Shahrob Mushtaq)
Just like Haroon, Hoorain was the most adorable of babies who loved nothing more than cuddling into either me or Arshia. ‘You can already tell she’s so happy,’ Arshia told me, smiling.
I couldn’t wait to start enjoying life as a four and we talked about going on holiday to the Lake District, then to Turkey.
Then, on Christmas Day, I went to work as a security officer. When I came back, Arshia was worried. ‘Hoorain isn’t very well,’ she said, leading me into the living room. There, our little girl was breathing shallowly and Arshia explained that she’d struggled to feed throughout the day.
Scooping her into the car, we took her to the hospital. By the time we arrived, her tiny body was floppy, unresponsive. Doctors admitted her, and she was put straight on oxygen and a drip.
But even after examining her, they couldn’t say what was wrong.
And rather than getting better, our darling Hoorain seemed to be getting worse. After three days, she started suffering from seizures. As doctors put her on a ventilator and arranged for her to be transferred to the intensive care unit, I felt so helpless.
We were given accommodation near the hospital, so we could stay close by and Arshia and I took turns sitting by her bedside, then returning to spend time with Haroon.
We looked into clinical trials, but Hoorain was too little, too poorly, to be accepted (Picture: Shahrob Mushtaq)
Eventually, after days of scans and tests, doctors finally had answers. And it far worse than I could ever have imagined. ‘Your daughter has Leigh’s syndrome, a mitochondria disease that affects the development of the cells in her body,’ they explained. ‘I am so sorry but there is no cure.’
I think, at that point, I went into shock. It just didn’t seem real. And even when I went back to Hoorain’s bedside and saw her frail body, attached to so many wires and machines, I couldn’t believe it.
How on earth could a condition I hadn’t even heard of be going to take her away from us?
The doctors would point out that Hoorain was in pain and they were unable to do anything about it and gently suggest that we turn off the ventilator to release her from suffering, but Arshia and I shook our heads.
We couldn’t give up on our little girl. We looked into clinical trials, but Hoorain was too little, too poorly, to be accepted.
As I told her over and over how much I loved her, how she had completed our family, I prayed for a miracle. That she would wake up and start breathing on her own. In the most hopeless of situations, I had to remain hopeful.
As I looked at my daughter’s tiny, still body, I felt a deep, black well of sadness open up inside me (Picture: Shahrob Mushtaq)
Because the alternative was unthinkable.
Yet, the unthinkable did happen. Early on the morning of 28 January 2023, we got a call from the intensive care nurses. ‘Can you come over now?’ they asked urgently. ‘Hoorain’s oxygen and heart rate is dropping.’
I threw on some clothes and raced down to her room, but I was already too late. All of the lines on her monitor were straight. The two nurses were crying. As I looked at my daughter’s tiny, still body, I felt a deep, black well of sadness open up inside me. I’m not sure it will ever close.
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Still in shock, we buried her the next day and went to a family friend’s house to stay. They looked after us and Haroon, who couldn’t really understand what was happening or where his little sister had gone.
It was only after a week that we eventually found the strength to return home, where Hoorain’s nursery, filled her Moses basket and rows of tiny clothes, were waiting for us.
We are only beginning to grieve for our beautiful baby girl but I already know that I will never get over losing her.
We can only try to stay strong for Haroon.
As told to Sarah Whiteley
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As I told her over and over how much I loved her, I prayed for a miracle – but the unthinkable happened.
