The year our lives changed without warning

In August last year our lives changed without warning. Faith our eldest daughter hadn’t been right for some time and despite seeing our local GP and being told it was all anxiety related, which we knew wasn’t quite right.

Faith was only 18 and thank goodness we decided to go to A&E it wasn’t OK that she was experiencing the symptoms she was.

Faith had a couple of brief episodes of palpitations prior to the 9th of August 2021, but it was this day I decided she needed to be seen immediately to really make sure nothing sinister was occurring. The fact we could see her heart rapidly beating from her chest I just knew something was wrong.

As we travelled to Accident and emergency in Cheltenham Faith commented on how “she felt fine and no doubt all would be ok, and we would both be home in an hour or so” this wasn’t the case.

Almost immediately in presenting Faith ended up in Resus, in a side room with several doctors and Nurses linked up to all kinds of machines and us both fearing the worst. I didn’t know in that moment how I was supposed to support her when inside I was an emotional wreck. Faiths heart rate was super high as was her blood pressure and there were irregularities in her sinus Rhythm.

From here things happened so quickly it’s still such a blur thinking back about how we managed the situation. Faith was admitted almost immediately, later with the diagnosis of a very, very, enlarged right side of her heart, and ongoing investigations started immediately.

Faith spent almost three weeks in Cheltenham where I spent most of each day with her. Unable to stay and only going home for a few hours to rest before going back to her bedside.

She continued to have have numerous tests and finding out little bits of information but by bit we began trying to process the situation we had found herself in.

Faith didn’t have other symptoms apart from her palpitations. She had always been a little larger than most and as the information unfolded, we understood this was due to all the extra fluid she carried and had carried for some time.

Faith’s condition was super rare for someone young as she was. She was transferred to Bristol Heart Institute for more specialist testing and treatment.

This was the beginning of September and Faiths worst fears were all being realised at once. She was terrified of being in hospital full stop and having surgery was also on her list. She told me she had had dreams of being in hospital and dying in theatre. Faith is needle phobic, and along with her Autism she was overwhelmed and scared of all she faced and clung to me for some sort of normality. She cried so much, and we cried together, we all cried and just began taking each day as it came.

We first met Xander on ward in Bristol shortly after we had arrived.

Faith by now had been given the diagnosis of CHD with a very leaky tricuspid valve which would need repair or replacement via Open Heart Surgery. She faced numerous tests which were way beyond what she already believed to be her comfort zone. Faith was carrying a large amount of excess fluid around the body, heart, and lungs. She also had a blood clot in the heart itself and the hearts function over all was extremely poor.

Xander came to see Faith and dropped some information in for her and my husband Steve who was with her on this day.

It was fair to say Faith was reluctant in engaging with anyone other than me and her father to say the very least.

Her barriers were up and firmly closed and anyone who entered her room did so at their own risk which anyone clearly could see.

I was really keen for Faith to engage in any support she was able to or offered as we were all out of our depth with what we were dealing with and facing, and completely reliant on the professionals for guidance.

I tried to ease Faith into things with encouragement, but she was still adamant she didn’t want any help from anyone other than me.

A few days this initial contact I met Xander myself, I also found it quite amusing how unimpressed Faith was to engage with him. I know I shouldn’t have but she took on a completely different persona in hospital to anything we had experienced before. This was her coping mechanism and quite funny at times!

Despite Faiths resistance Xander was prepared and ready for the challenge.

He was a breath of fresh air from all the other heavy visiting. He honestly had so many tricks up his sleeve on how to connect with Faith, taking his time and slowly gaining her confidence I watched him chip away at the barrier she held onto.

Xander continued visiting several times a week with his trusted rucksack filled with games of every description and taste and started to work his magic, by peeling back layers by and giving Faith the time and opportunity she needed to process her surrounding and new normal, with the odd mood swing and tantrum we love her so much for – he navigated through, he gave her back her voice and the confidence to drop her walls and begin to start opening up.

Xander started playing the game “UNO” with Faith which has always been a family favourite and a game she loves to play with her younger cousins when at home.

Xander’s bouncy happy persona and empathetic ear grew on Faith, and I saw her relax and slowly allow Xander into the fold. This was such an accomplishment on all counts.

Xander being there for me too was a huge sense of relief. It was a welcome face, someone to bounce questions off, offer advice and sign post us for additional support through other charities and foundations which may have been assistance to us in our time of need. He helped inform us of lots of things Faith would be entitled to and how we should start making these positive changes. He has telephone numbers galore and has pinged me so many over the last seven months.

Being in hospital is such a lonely, lonely place, I struggled watching Faith deteriorate and being so completely helpless, I would have done anything to change places with her and take away her pain. Travelling an hour and a half to and from hospital each day just added to the pressure I felt to be there for her, as well as switching hats once I left hospital to make sure Faiths younger sister Holly was coping with the situation, she found herself in and me not being there as much. Guilt is massive and as someone who carries guilt for everything, I felt so utterly isolated, some days I just dreaded what the next day would bring for us all.

My husband Faiths dad works over seas with the military, so this was another strain to our “new” situation and all the communication became quite overwhelming. We had so much to juggle and filter into decisions it was and is very overwhelming.

Xander has been a complete lifeline for Faith, myself, and my husband and to us all as a family.

Youth@Heart are experts in what they do, what they can offer and it’s not just about supporting the patient – it’s supporting the family and seeing everyone for who they are not just a diagnosis or procedure.

Xander has taken the load for me on many occasions where I’ve been unwell, or unable to reach Faith.

Days where I’ve been so utterly exhausted my illness has taken over and I’ve been unable to drive.

Xander has helped accommodate what’s right for us all and I have always felt safe knowing he was there.

Together – Faith, Xander, Steve, Holly and I have had walks around the hospital, finding the secret garden for fresh air in the summer months and being able to feel the sun on your face after a long hard stagnant day was wonderful.

The importance of still experiencing what the world offers around you despite the challenges you face.

When you feel trapped in a time and experience, the world around you continues, and you just feel as though time disappears.

Xander has taken Faith for essential supplies from Boots to WHSmith, M&S, Costa and more. He’s kept Faith motivated when she’s felt low. He’s made her smile with spontaneous treats – KFC delivery in HDU (even though she doesn’t like chicken) It was what she fancied so he wandered into town to get it for her, and to keep her going when times were hard – very hard!

We have shared tips, sat on Faith’s bed playing cards, playing games and generally making the best of the situation we were in. Exchanging recipes, talking films, Netflix and much much more.

As someone who is always there for others, and will always put themselves out there to help people if I am able, this role reversal left me almost felt guilty accepting support from someone else!! how stupid does that sounds even as I wrote it, but it really was something I struggled with – don’t over think it!!! Youth@Heart is there to do exactly that…Everyone’s circumstances are different, and the charity will whole heartedly support you in anyway it can.

Faith was lucky enough to be home for Christmas after a being at Bristol Heart Institute for four months as an inpatient.

Even then despite being home only for a three-week period the charity made contact numerous times via message, sent Faith a gorgeous Christmas box through the post which they arranged a time with other patients to share there boxes and share the love.

Xander feels like part of the family, and we are all so utterly grateful for his ongoing support!

When Faith was re admitted earlier this month he was back to visits on the ward and the familiar face definitely made it more bearable.

We were uncertain if Faith would need another OHS as she now has a very leaky Mitral Valve and fluid build up on the lung.

Any re admission isn’t great but seeing a familiar face and slipping back into routines we had previously created made the time pass more easily.

This time Xander’s visits were more social, than informative, but he was a great help sorting out some meal choices for Faith as beforehand things had been quite limited.

Faith also contracted Covid whilst in hospital which was an added worry for us all. This didn’t stop Xander from checking in and keeping contact open.

Faith is currently at home recuperating after all the procedures she has had.

She had her lung drained earlier this week and is getting over the virus.

I know that Xander will continue to support Faith and us on with her ongoing journey and treatment and for this I will always be eternally grateful.

If anyone’s on the fence about taking the support offered to you from Youth at Heart, or are questioning is it really for me???? JUST DO IT!!!!

You can make of it what you choose, but for us it’s been a lifeline, friendship, support, and knowledge – we all need something familiar to share the burden.

Thank you Xander you are a true gentleman, and Thank you Youth@Heart for enabling us such a fantastic Youth Worker in our time of need.

If you could benefit from chatting to our team – get in touch with Xander, our ACHD Youth Worker on
07832 668907 or email xander.patel-cook@uhbw.nhs.uk or can get in touch with our team by emailing admin@youthatheart.co.uk