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Clare Caulfield: 'To lay person, setting up of charity like quantum physics'

Published 11/04/2016

Clare Caulfield with a defibrillator at a local sports club
Clare Caulfield with a defibrillator at a local sports club
Clare’s daughter Shealyn with one of the charity’s entertainment systems

The Big Interview - Chris McCullough talks to Clare Caulfield, the founder of Braveheartsni, a charity set up to support the needs of teenagers and young adults in Northern Ireland with congenital heart disease.

Q. What is your connection with the charity?

A. I founded Braveheartsni with my daughter Shealyn in 2014. The need for resources for teenagers with congenital heart disease (CHD) in Northern Ireland became very evident when she was 14 as she had heart failure and had to be admitted to the Royal Victoria Hospital.

For the first 14 years of Shealyn's life I had been a fundraiser for HeartbeatNI, which supports the children's heart unit in the Royal Hospital for Sick Children and their families. However, it wasn't until June 2013, when Shealyn was admitted into hospital, that we realised her link with the children's heart unit had started a transition moving it into the new adult congenital heart team.

Q. Why was the charity formed?

A. Shealyn was born at 28 weeks with severe aortic stenosis, which they quickly realised was congenital. She had three major open heart surgeries by the time she was 13. The first surgery was when she was 10 months old and only weighed 5lb.

The doctors did their best just to try and keep her alive. Her second was at six years old in Birmingham when they transplanted human valves, and during her most recent they transplanted a mechanical valve. She ticks like a clock and you can hear it from the other side of the room. Her last surgery was the hardest for us all as she was a teenager who was very clued in and wanted to know every single plan and outcome.

It really was exhausting and heartbreaking dealing with her emotions more than her pain.

My sister Ann was born with cardio tetralogy and Fallots in the 1960s. Ann was known as "the miracle child" in the national papers. She was a blue baby and spent most of her young life in oxygen tents in the RVH. A visiting surgeon said he would operate on her and the consultant said no, because she would die. The surgeon quickly pointed out that she was dying anyway.

When she was seven she had all her teeth removed (this was the norm in those days for heart surgery) and underwent pioneering surgery. Ann recently turned 50 and has two beautiful grandchildren who have kept her fitter than she has ever been in her life. Her determination is mirrored in Shealyn.

I think all our CHD kids, teenagers and young adults share this trait. There was nothing in NI for teenagers, nowhere to turn that their parents didn't need to be involved in also. No one had looked at this age bracket as a standalone group. Whilst in the adult hospital I had to stay with Shealyn at all times due to child protection laws as she was 14 and in an adult environment.

She was stuck in a white clinical side room and I slept on a fold-back chair. Whilst the room was spotless and the staff excellent, it was a far cry from what we were used to coming from the children's unit and a huge culture shock for Shealyn. These teenagers feel different and isolated in their daily lives and this highlighted how alone they were.

The ACHD liaison nurse told me of a young teenager who was admitted for a couple of months from a care home and he was so traumatised he didn't speak for four days. He had no one to visit him, no toothbrush or money for the shop. The nurse bought his toiletries out of her own money. He had no way of communicating with his friends as he didn't have a mobile.

This played on my mind every time I looked at Shealyn hooked up to all the machines but safe and as happy as she could be with every piece of ICT equipment you could imagine. My heart broke for that young man so Shealyn and I decided to make a change. HeartbeatNI provided iPads and laptops for patient use and we came up with a plan. Braveheartsni was born out of necessity during a time of real struggle, worry and heartache and a desperate need for Shealyn and I to give a little back.

Q. Where is the charity based and how many staff or volunteers work there? Do you have centres across Northern Ireland?

A. We are 100% volunteers. We believe that the money raised should be spent directly where it's needed. I get a lot of stick as I always know someone I will beg off before I will spend our funds. Our main hub for Braveheartsni is in my house in Ballymena. I launched the charity in 2014 at a masquerade ball in Ballymena and from there other Bravehearts got in touch and came along and they have become incredible ambassadors and fundraisers.

We have become a very close group. We now have a group in Belfast which we would love to grow, running events and fundraising. Our charity leader is Jemma-Louise Lappin, who herself is a Braveheart and a new mum. We have had families contact us from various places, which really delights us. We don't have a register of all CHD patients in NI, therefore we have to rely on word-of-mouth.

No matter who contacts us we will encompass them into our Braveheart family and give them any support needed. It is the ethos of Braveheartsni that it is shaped and run by the Bravehearts themselves as no one knows better than them what their needs are. These needs are constantly changing with life and family responsibilities.

Q. Are there any statistics showing how many children and young adults suffer from congenital heart diseases?

A. There are approximately 300 children born every year with a heart condition in NI and around 150 of them will need intervention or surgery. Thankfully there are more children reaching teenage years and adulthood than ever before, and because of this the trust had to provide CHD specialists. The ACHD team are still in their relative infancy in NI and growing by the week.

It's a strange demographic to try and quantify. The ACHD team have about 3,000 on their books, however they know there are many more around the province that have never been in touch due to them being looked after by their own doctor or general cardiologists.

Braveheartsni is for teenagers and upwards. However, due to our close links with HeartbeatNI we have had many enquiries from parents with young children and we pass them onto HeartbeatNI. We aren't territorial. All CHD parents and patients know only too well the difficult journey they go through, therefore by teaming up with other charities we can use precious resources and funds in a more beneficial way.

Q. How big a problem is congenital heart disease in Northern Ireland and what support do kids with it receive from the NHS?

A. CHD in NI is a big problem. It's an invisible disease and many patients, especially teenagers, hide their condition. More children die from CHD each year than all of the children's cancers put together. The CHD team in the RVH are incredible.

Shealyn never wanted for anything when in the Clarke Clinic as a child. Parents can ring the ward and consultants directly. They are honestly fantastic and this was a huge factor when Shealyn turned 14 and had to be admitted into the adult ward. We were shell-shocked, to be honest. CHD can be very isolating, especially for a teenager. I watched Shealyn's friends dwindle away after she came home from Birmingham as she remained unwell.

She had to give up fourth year and restart school the next year. Her friends moved on and Shealyn isolated herself more and more. Her hair started to fall out due to the many medications she is on and that affected her more than the surgeries. Her mental health went through the floor and I spent many mornings crying and begging her to get out of bed.

I discovered that she stopped taking her meds as she said she was ill with them or without them. She totally refused to go on. After about a week trying to deal with it on my own I contacted Jan Gordon, the ACHD liaison nurse. Jan rallied the nurses and doctors to support Shealyn and me.

They were true lifesavers. Jan reassured me that this wasn't unusual for CHD teenagers as their medication is the only control they have in their life. This is also the basis of Braveheartsni, we are here for the parents and support network too.

I've spoken to many parents; we've cried together and reassured each other as we know how we are feeling without having to explain. These things are priceless. We're all in it together.

Q. What does Braveheartsni do to help these young people?

A. We have made many changes and helped many Bravehearts and their families in a short period of time. We had the privilege recently of providing medical equipment to enable a young Braveheart to join her family at home for her last weeks after spending months in the hospital. This enabled the family to spend her last days at her side in the comfort of their own home.

The other Bravehearts befriended her in the hospital, doing her nails and hair and offering some company. They rallied around and I was incredibly proud of them. This is the essence of our purpose. We try to help in any way the patient or family needs and each situation is different. It may be company, advice and guidance or financial. We have provided funding to families whilst they have been in England for surgery.

We provided petrol money for families to be able to visit the Braveheart in hospital and have a meal together in the cafe. Our biggest plan is to raise funding to open a designated teenagers' unit and support network for the family or carers. We will consider anything any Braveheart needs, we are still young and learning.

Q. How many people does your charity support across the province?

A. We currently have 20 Bravehearts and their families but we are very eager to reach out to anyone else, patient or family who would like to be involved. We aim to have support groups in all regions of the province, run by either the Braveheart or a supporter. I'm loathe to hand out hard-earned funds on advertising as the money is so desperately needed elsewhere. Hopefully this article could be the start of our name getting out there faster.

Q. Do you receive any Government funding or how is the charity financed? Do you have to fundraise?

A. We are self-funding and are all volunteers who work full time. Our Bravehearts are constantly coming up with fundraising ideas. We have a gala ball coming up this month in Ballymena and a football tournament in the summer with the Premiership and Scottish Legends. Our Bravehearts make me so incredibly proud. They work so hard in the hope they can provide a future and support for others like them.

Q. What can the Government do to help support the hospitals and charities like yours to help these young people?

A. Setting up a charity to satisfy the Government is soul-destroying. The process to a lay person like me is like trying to understand quantum physics. It really needs to be made simpler and quicker. I believe volunteer charities like us need to be listened to by Government and heads of medical trusts as we are at the coal face and live with these issues every day. Things like DLA needs to stop being so rigid. One size does not fit all. DLA is extremely hard to get when you have CHD as you don't have outward physical ailments or breaks. Understanding is the key. Our Bravehearts are determined to work and enjoy life. They deserve help to be able to live life to the full.

Q. Does the general public need more education on the effects of congenital heart disease?

A. Without a doubt. Look at all those fit sports men and women who just drop on the pitch. More often than not it turns out they have an undiagnosed congenital heart condition. Earlier detection like the pilot in Daisy Hill hospital by HeartbeatNI by testing all new born babies is only one way. Health checks at sports clubs funded by government are essential. GP training is a must. Front line prevention of fatal outcomes is possible.

Q. What else could your charity do to help these children and young adults?

A. By the very nature of their conditions no matter what we do we will always have CHD babies arrive into our care, therefore how we help them, their families and their medical teams will always have to be flexible to back up medical advances. We will always be there for the Bravehearts and their changing needs. What that brings? I've no idea. I'm just so grateful that more and more are living into adulthood. We will always help how we can. We won't judge or choose what those needs should be.

Q. Is there anything you can do to educate the general public and highlight the extremities of congenital heart disease in Northern Ireland?

A. It would be a dream to run a national campaign with the sports clubs, football and GAA to highlight conditions and defibrillator use. Working in tandem would reach more families than we could ever manage to on our own.

Q. If you had a magic wand and could wish for anything to help children with congenital heart disease what would you do?

A. Now there's a question! I would have a state of the art CHD unit. Teenagers, young adults and the ever-growing older CHD populations need one. I also would like a mental health strategy and a formula to help with the desperate and isolated. A unit that would incorporate other teenagers in similar positions a couple evenings per week is very much needed. This is within our grasp. We are about to launch our fundraising campaign to get the necessary money to open a version of this as soon as possible.

Q. Do you think the UK should remain a part of Europe and how would an exit affect Braveheartsni?

A. My own personal view is that yes we need to remain a part of the European Union, albeit with major reform, though. There is an incredible amount of funding that can be accessed through the EU and it can only benefit our consultants and surgeons to keep their skills at the top. Research programmes can be funded and accessed through the EU. These programmes are essential to the future of our Bravehearts.

Belfast Telegraph

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