Together at Christmas

Together at GOSH
Thanks to Great Ormond Street Hospital (GOSH), Evie will spend Christmas at home this year.

At Christmas, time spent with the people you love is precious. For the families of patients at GOSH who are unable to go home at Christmas, this is true more than ever.

Last December, Evie was reliant on an artificial heart and doctors at GOSH were fighting to keep her alive as she waited for a heart transplant. Today, mum Nicole expresses her gratitude to the donor family whose “selfless decision at a terrible time” means her three-year-old daughter is at home this Christmas. 

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Fighting for her life

In May 2015, Nicole noticed that her then one-year-old daughter, Evie, wasn’t her usual active self. When Evie’s breathing became unusually fast, Nicole called 111 for advice and they called an ambulance straight away. Tests at The Ipswich Hospital showed that Evie had a huge dilated heart and she was diagnosed with dilated cardiomyopathy, a condition where the left ventricle is enlarged and weakened. This can prevent the heart from relaxing and filling with blood as it should.

“It was an absolute shock that day,” remembers Nicole. “We were told that a third of children don’t survive this, a third need a heart transplant, and a third can be maintained on medication and sometimes the heart repairs itself. We just clung to the hope that Evie would be one of those who recover. As it turned out, Evie’s heart had become too stretched to repair itself.”

Evie was transferred to GOSH to be put on a Berlin Heart, a mechanical device that pumps blood around the body and takes on the work of her heart while she waited for a donor.

Looking for answers

“Going to GOSH meant that it was definite she would need a heart transplant and we couldn’t cling on to the hope that her heart would repair itself. It was really hard to come to terms with but I was so appreciative that we have the technology and expertise in this country to keep her alive.”

Evie had a tough time on the Berlin heart and had three strokes. “Evie wasn’t text book at all,” says Nicole. “Evie was producing lots of blood clots. Some went nowhere, which was a miracle, but some went to her kidney’s and her spleen. She was on lots of medication to stop the clots forming but it wasn’t working.

“Her consultants never, ever stopped looking for answers, which I found amazing. They even went abroad to get more information and advice. They always came up with ideas to try. Her fight for life is incredible and it was matched by the team’s fight for knowledge.

“It could have gone either way. We were living on a knife edge for months.”

Christmas at GOSH

By Christmas 2015, Evie had barely left her ward at GOSH for over seven months but Nicole says the staff did everything they could to make it special.

“We were just living day by day, really hopeful that we would receive the call,” says Nicole. “In the lead up to Christmas we had Christmas movie days, where we put pillows and covers on the floor to sit on together. We turned the lights off, ate popcorn and watched DVDs on a big screen. Memories I will cherish forever. 

“On Christmas day we had a really nice Christmas dinner in the hospital canteen and the afternoon was just ours to have family time. We opened presents and tried to do normal things together as a family.

“Christmas is a time to make memories, to try to forget what’s going in on and to be happy and appreciate that you have each other and hold each other close. The kids have missed out on everyday life and go through so much pain and anxiety, so those days when you can just be together make all the difference. You really need moments like that.”

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Conflicting emotions

Finally, a match came through and a heart became available for Evie.

“You’re full of conflicting emotions,” remembers Nicole. “One minute you’re so high and ecstatic that this is actually happening. Then you think about the severity of the operation. It’s a massive operation for the child to go through and you become really fearful. Then you think about the donor family and the selfless decision they are making at such a terrible time. You wonder how you can ever thank them enough. Someone has given her a life. There are no words that can express the gratitude you feel.”

After a few months of recovery, Evie was discharged in March 2016. Nicole said: “There was some sadness in it because the staff at GOSH had become like an extended family. They genuinely care about all the kids – it’s not just a job, it’s their life and you really see that. Also, if you have any concerns, there are nurses to ask.

“So there’s a mix of anxiety and elation. Your dream has come true,you’re going home. The day that you fantasise about is finally here. I will never forget that feeling of walking out the door.”

Looking forward to this Christmas

Nicole says: “Evie has physical scars but those will heal with time. Evie is so enthusiastic about life. You look at her and wouldn’t know all she has been through. She’s so happy all the time, she’s an absolute joy.

“As we didn’t get to have Christmas together last year it’s going to be a big celebration all together this year. We want to make it really special for Evie. Our Christmas plans this year may seem ‘normal’ to most, but a normal Christmas was only a dream last year and it seems that just sometimes dreams really do come true.”

Help families be together

With your support, we could fund family accommodation so mums, dads, brothers and sisters can stay close by. With your support, we could fund extra beds for parents on hospital wards so seriously ill children like Evie never have to be alone. By supporting us today, you can help families be together tomorrow, by funding research and equipment that will enable the hospital find new cures and save more lives.

With your support we can help families, like Evie’s, be together this Christmas.

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