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We live in Edinburgh so to be with Khadija every day just wouldn’t have been possible.

News   •   May 03, 2016 16:36 BST

My daughter, Khadija, has been on the Berlin Heart machine for eight months now as she waits for a life-saving heart transplant. We believe she’s possibly the only patient who has been on the Berlin Heart for this amount of time, and she could remain on it for another few months until a donor heart becomes available.

This means the wait, the anxiety and the worry will continue, for all of us.

Khadija is only little, she’s just over one year old yet and has spent the majority of her life in hospital, and not even in a hospital near home. Khadija is currently on the Children’s Heat Unit at Freeman Hospital in Newcastle upon Tyne, over 120 miles away from our home in Edinburgh. She has been here since last June when she became seriously ill.

On that day in June, we’d put Khadija down for a nap and within five minutes she was crying uncontrollably and wouldn’t stop. Over the next hour we tried to calm her down but then noticed that she was gasping for breath, her eyes were half open and her body was turning blue.

We called an ambulance and paramedics were at our door within minutes. The first responder noted our daughter’s heart rate was at 170bpm and it was rising. She was rushed to The Royal Hospital for Sick Children in Edinburgh, but the doctors there said she needed to be transferred further away to Glasgow.

We were in Glasgow’s Royal Hospital for Sick Children just short of a week. This wasn’t too bad as we weren’t that far away from home and could be there for Khadija and also take care of our eldest daughter Alisha. In Glasgow, Khadija had lots of tests - after a few days the doctors attempted to bring Khadija out of her sedation, but her heart did not respond well so they returned her to this state.

Following that, an x-ray showed her heart was enlarged and further scans and test showed that her heart was not functioning correctly nor did it resemble an average heart. We were told she had a heart condition called dilated cardiomyopathy.

From the initial tests and discussions, it was suggested that she could survive and cope on medication. However when the follow up x-rays and scans were done, it was decided that it would be for the best if Khadija had a heart transplant at Freeman Hospital in Newcastle.

I felt like I was drowning, I couldn’t catch my breath. We were being hit with a lot of information in a short time span; it was shocking to say the least. Khadija’s first four months of life were pretty much the same as any other young baby. She smiled, drank milk and slept. The two weeks before all of this, she had begun to develop her own personality, babbling, giggling, wriggling and becoming aware of those around her.

Although we felt like our world was collapsing when we found out how ill Khadija was, we had to stay strong for our daughter. We were prepared to do anything to make her better. So on receiving this news she needed specialist treatment further away, we grabbed our bags and headed down to Newcastle to be with her.

We have been in Newcastle ever since. And luckily we have been able to stay together to support Khadija.

My family are together because we’ve found a ‘Home from Home’ in Scott House. We’ve been staying in Scott House since Khadija was admitted to Freeman Hospital and it’s been really good for us. Living so far away in Edinburgh, being with Khadija every day just would not have been possible. It’s a six hour round trip to Newcastle, and with her big sister in the car we would have had to stop often, making the journey longer. Of course, if that was the only option, it would have been worth it, and we would have done it. But thankfully, we didn’t have to.

It is best for us all to be here, for Khadija and to keep her strong. Khadija’s time in hospital has not been easy – she has been up and down. She recently had an accident which has set her back a bit, but she has us with her to keep her positive.

It also makes a difference to have Alisha here for Khadija. Having the support of her big sister through this situation makes things better for her which is funny, as when we first brought Khadija back as a baby, Alisha was not keen at all on sharing her mum and dad. But since Khadija’s been ill, Alisha has really taken on the big sister role, and is a lot more active and warm with her.

Scott House is a step away from the hospital, convenient for a bite to eat and a nap. The community feeling you have when you are here is what I like most. All the families are in similar situations and sharing their stories with one another which helps lighten the strain. Even just having someone ask ‘how is Khadija doing today?’ helps ease the tension a little bit.

At the moment, Khadija is doing well, she’s happy and developing. But the fact remains that we need a heart for our little girl, and our wait is longer than most because there are fewer donor hearts available from people in the Black Asian Minority Ethnic (BAME) group.

I think we should be able offer assistance to another person through organ donation. There is nothing more rewarding, I believe, than helping someone else, and this would make a massive difference to so many.

If sharing my story inspires just one person to sign the register while I sit here waiting for a heart for my daughter, then I will be happy knowing that good has come out of this awful situation.

Usmaan and Maria Khalil - Khadija's Parents

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