Young woman with rare heart disease works to improve hospital for children

By Clare Sellers

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Emily Delahunty, aged 19 from Liverpool, was diagnosed with a rare heart condition at birth and has spent her life in and out of hospital, all the while improving the way children are treated there.

The Heart Condition

At birth, Emily Delahunty was diagnosed with a hole in her heart and had arteries that connected to the wrong chamber of her heart. As a baby, her heart struggled to pump enough blood around her body, which could lead to low blood pressure and had to be fixed through surgery.

Formally known as transposition of the great arteries and multiple ventricular septal defects, the condition can be fatal, with 90% of infants dying within the first year. However, Emily received a nine-hour surgery, and the odds were thankfully in her favour.

“Recently she has become more confident and prouder of the scar, as she states she wouldn’t be here without it.”

Now her condition presents many obstacles; she must avoid the cold, drink enough water and remember to eat. It can lead to serious heart palpitations if she does not take care of herself, threatening her stable condition. She explains her logic towards staying healthy and avoiding hospital visits as much as possible: “As long as I maintain a healthy lifestyle then I’m doing the best I can and I’m quite lucky in that respect, in comparison to some other people”.

The surgery left Emily with a scar that she was self-conscious about for many years, but recently she has become more confident and prouder of the scar, as she states she wouldn’t be here without it.

“It’s only in the past few years I’ve felt confident and carefree about my scar, which just comes with growing up and appreciating that without my scar, I wouldn’t be here, so I’m quite proud of it now”.

She is grateful that her condition was fixable through early surgery and that she has been able to live and cope comfortably with the effects of it throughout the years. Attending check-ups every 12-18 months ensures that she remains in the healthiest state possible without having to be admitted as an inpatient when things go wrong.

Alder Hey Children’s Forum

Even after her surgery, Emily spent her childhood in and out of hospital for regular check-ups, and so at the age of seven, she became one of the first members of a new initiative: Alder Hey Children’s Forum. She spent the next 10 years volunteering her time to the group and helping improve different aspects of the hospital experience for others.

“I liked going somewhere where people could understand, in a way“

The members of the group were all patients at the hospital, often with long term conditions that warranted several trips to the hospital throughout the years. This brought about a sense of community and friendship that helped support her through a difficult time.

“I think I loved the fact that when we were there, whilst everyone has different problems, we were all similar and we all could sort of empathise with each other.

“I liked going somewhere where people could understand, in a way, what I’ve been through, especially with how having a condition can affect your experience socially.”

Emily feels that, despite her condition, she has created a fulfilling social life and taken part in many sports and activities, such as dance, whilst remaining cautious. Along with her dance troop, Emily has performed at many incredible venues, but a standout performance was one that took place at Disneyland Paris in 2014.

She flew out with her friends and danced in front of hundreds of people, proving she sees no limitations for herself. She spoke about how the dance troupe has supported her through tough times: “My dance school was the only place I felt comfortable with it because the girls were always looking out for me, and had known me since I was three”.

While at the forum Emily took part in many improvement projects, usually thought up by the group themselves, but she describes talking to patients and families on the wards as one of her favourite things to do.

“It was amazing to go from giving the advice to experiencing the effects of it as a patient.”

“We did this thing with Royal College of Paediatrics where we actually got to go round the wards and interview families and patients, and it wasn’t just us anymore in that room giving our ideas, but we were actually going out to patients who were at the hospital at the time and asking what they wanted”.

The forum was responsible for many changes within the hospital, including the clinical holding project, the introduction of personal contracts, and the design of the new hospital built in 2015. Emily also took part in-ward inspections to ensure patients were getting the best possible care in the best environment.

“It was only when I’d go to my appointments and I’d see things that we’d changed and experience it as a patient that I’d realise what we were doing, and how things were actually happening. It was amazing to go from giving the advice to experiencing the effects of it as a patient.”

After being a part of the forum for almost 10 years, Emily decided to take a step back to focus on her studies but continues to carry the wisdom and empathy that the experience has given her into her future endeavours. She appreciates the opportunities she was given during her time at the forum and acknowledges that it has taught her a lot, both practically and emotionally.

“I think I’ve grown a lot more open-minded and more aware of other peoples’, not just struggles and challenges, but also their abilities and the fact that things don’t get in peoples’ way just because they have a condition or an illness”.

A Future in Nursing

In 2018, Emily applied to study child nursing at Liverpool John Moores University and was granted one of only 30 places on the course. She began to study there in September 2019, often remotely because of the Covid-19 pandemic.

However just a few weeks after the academic year began, she decided to take a leave of absence as she could not participate in high-risk placements at the children’s hospital due to her condition, and no lower risk placements at Alder Hey were available for her.

“Whilst I said before that I’ve never thought that I’ve been limited by my heart condition this is something where it’s actually done it.

“I turned 18 last year and it’s sort of like I’ve got to make the decision, and now this is where I have to put my health first and take responsibility for it. I’m going into this to take care of other people, and if I can’t take care of myself first then I’m not doing it right.”

Emily had planned to continue her studies at the beginning of this academic year, but after it became obvious that the pandemic would not be slowing down any time soon, she took the decision to take a gap year to protect her health.

“When she has completed university and gained her degree, Emily hopes to come full circle and obtain a job at Alder Hey Children’s Hospital, a place close to her heart for everything it has done for her in the past.”

The complication has not deterred Emily from her career goal, as she plans to continue her studying as soon as is practical. Having spent her whole life around hospitals she feels confident that child nursing is the perfect career path for her, no matter how long it takes to get there.

“I love the idea of being hands-on with patients and the personal aspects of it, for all the times that someone made me smile or was compassionate or supported me, I’d love to do that for someone else.”

She is passionate about making others’ time in hospital easier and offering people the comfort she knows is needed at such a stressful time in peoples’ lives. When she has completed university and gained her degree, Emily hopes to come full circle and obtain a job at Alder Hey Children’s Hospital, a place close to her heart for everything it has done for her in the past.

If you are a patient at Alder Hey Hospital and would like to volunteer visit https://alderhey.nhs.uk/join-us/children-and-young-people-forum

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Image courtesy of Emily Delahunty