Jo tells her story this Carers Week

Carers Week jos story of being a parent to a CHD young personI am Jo & a single mum to 4 fantastic children. All young adults now. My eldest son (24) was born with CHD: HLHS & a chromosome defect 22q11. I think it’s important to stress that I don’t particularly identify myself as a carer. I am a mum to the most incredible children & I am striving to support all of them with any concerns that need to be addressed – striking a balance & reinforcing to my youngest 3 that despite a lot of my time is focused on their brother’s ill health, they are all loved equally and any worries or life factors outside our current “heart” situation are both valid & important. And Youth@Heart are here to offer counsel to us all, to hold our hand & a shoulder to lean on with all the emotional turmoil living with a dearly loved member of the family & their trauma of CHD.

We were first introduced to Youth@Heart during G’s hospital admission last summer. G was 23 & despite him having transferred to adult services years ago – we had not heard of this charity. And despite this being a shame we have most definitely used this resource to all our advantage since.

A little bit of history: our very 1st appointment at the Bristol Heart Institute was not a good experience, as the technician undertaking a routine ECHO didn’t appear familiar with the anatomy of a patient with HLHS (but then again, G is well within the first 100 patients to undergo the 3 stages of open heart surgery, this heart defect entails)…

We did not hold much faith or trust with the new services we were introduced to at that time & that definitely had a negative impact on us. A LOT has changed since then & I would like to emphasise just how positive our current experiences with the Bristol Heart Institute are, with a dedicated team & of course Youth@Heart very visible at both outpatient appointments & on the ward.

Fastrack to 2020, the middle of a global pandemic & a major medical emergency for us. “Hello & welcome to our lives Y@H”. In particular, Xander. It’s certainly fair to say that as with other CHD families Covid has exacerbated our own challenges, but Y@H have been an absolute lifeline to us all. I can’t begin to surmise the gratitude I have for the little bit of respite offered to me: Xander being able to visit my son whilst his siblings or other close family members were not authorised to do so. This was invaluable.

Since then, Y@H have had a huge impact on all our lives, with follow up chats using different platforms, more hospital visitations & even a home visit from both Xander & Monet.

Sadly, G is now in irreversible heart & liver failure. We were referred to the Freemans in Newcastle for a double transplant assessment back in September. Three cancellations (Covid related) we finally made the long trek north in April, at our 4th attempt… We had an agonising 3 week wait before they responded & the day before Gs 24th birthday informed us that he would not be placed on the transplant list – he’s deemed too high a risk. Y@H have remained our “professional friends” every single step of the way.

As Gs main carer, one of the biggest challenges I’ve faced is a huge lack of information, especially as he also has additional needs. These needs were met at school with an EHC plan – but nobody advised us that this should have remained in place until the age of 25. In fact, there doesn’t appear to be 1 single source to gain information to guide parents in similar situations. As Gs health has deteriorated Y@H have been indispensable in providing or gathering answers to a wide variety of dilemmas, all the while continuing their work to support each & every member of my immediate family – including me.

Our “professional friends” continue to check in & visit. They know me just as well as my own close friends & family – & to some extent better. Well meaning friends often quip “they know how I feel”, if I’m having a low day they empathise – Y@H know I “work” best when enveloped in positivity. I know my son won’t get better, but I don’t need to dwell on that & Xander really pitches his chats with me with the exact amount of encouragement I need to remain as upbeat as possible. I can’t change the past, I don’t know what tomorrow will bring, but today is a gift & that’s why we call it the present. I am learning to live for today & cherish each & every moment… You see, sometimes it’s easier to answer a friends “how are you?”, with “I’m fine” – but I never feel the need to do so with my professional friends. I can be both open & honest & they always respond accordingly.

As G will undoubtedly deteriorate my mindset well may change, but I know I can rely on Y@H to evolve & match our needs.

There are days when I grieve for what he should have. There’s no other way to explain it. He’s been robbed of a life he deserves, one that I (although I don’t/won’t now – my place is with G) and his brothers and sisters are able to enjoy. At the age of 24 he should be having a blast! Living his life to the absolute max, having adventures & seeing the world – travelling, enjoying festivals, pubs & clubs… instead he’s stuck with his old mum trying my best to remain young & relevant so that I can try & modify something that’s worth him fighting for. I pray he’s still got a bit left in his reserve tank…

It would have been nice to have learnt about this fantastic charity years ago, at conception as I’m sure our journey may not have been quite so lonely or traumatic. But, you’re here when we need you most. Now. And I will do everything I can to raise awareness & promote the wonderful work you do.

There’s still a long way to go in recognising all the burdens family carers shoulder, particularly the financial ones – but headway is being made.

In the meantime, I’ll continue to be the best mum I can possibly be – with a little help from my professional friends. Thank you Youth@Heart, thank you Xander & Monet.

If you’d like to reach out to our team or think you could benefit from the support of the Youth @ Heart team then please get in touch with:-

Monet – Community Youth & Family Worker

Xander – ACHD Youth Worker