Support for families: July 2026

“Everything made an impact, i cant put my finger on one thing but all the support we received was amazing.”
— heart mum

During the month of July…

• 43 families worked with overall

• 23 families received a tailored packaged of Family Support

• 20 families engaged with

  —

• 5 young people and their families worked with and supported

• 10 Travel Grants given
• 7 attended Cardiac Cafe
• 39 Supermarket Vouchers given
• 0 Exceptional Grants given

Support at every stage of the journey

Wellbeing boxes
When in hospital, no matter what age you are, we know sometimes all you want is a little treat. The team have been busy this month dropping off wellbeing boxes across the hospital, on the wards we support. The adult heart ward (L16), PICU (L47) and the neonatal ward (L43) received boxes filled with snacks and drinks, as well as a couple mindfulness activities.

Cardiac Cafe Inpatients

This month the family support team hosted a Cardiac Café in the hospital for families. This was a time for parents and siblings to get away from the ward, have a little something to eat and drink and take some time for themselves.

The CHSF team provided colouring and mindful puzzle activities for parents.

A family who’s child was in surgery came along to take their mind off the day and have a space to simply sit quietly and not have to explain anything, with people who ‘just get it’.

Touching base

Always just a phone call away, this month we have had the opportunity to touch base with families who have been discharged. We are now dedicating time to following up with families when they are no longer on the ward, sign-posting them to local services and having conversations to see how families are once the ‘dust has settled’ after they get home

Welcome to Holland

We currently have nine patients who are in hospital following a new diagnosis, and their families are now navigating a new world which can often feel lonely

Our support for new parents is so crucial – offering a listening ear, a friendly familiar face and a welcomed distraction, we can be there to make things a little less isolating

We often witness the grief parents may be experiencing when their child receives a CHD diagnosis. Whilst the love felt is more than a person can imagine, the loss of the life they imagined is still present.

From a mummy who is unable to breastfeed, to a daddy who fears holding their child because of their drains and wires – these are part of a journey they did not imagine they would ever be taking

This takes us to a great poem which was written to help people understand what it is like to raise a child with a disability:

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Colosseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian, It’s all very exciting.

 

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

 

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

 

It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there.

 

And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss. But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the lovely things… about Holland.

— By Emily Perl Kingsley

Our Extraordinary Orlah

This is the perfect time to introduce you to Orlah. Orlah was born with Down syndrome and congenital heart disease. Orlah had open heart surgery following her birth and is doing amazingly well. So amazing in fact that she is now inspiring others through her own social media platform! Give her a follow at Our Extraordinary Orlah | Facebook

It’s only with the help of our incredible supporters that we can continue to be there for every family that needs us. Thank you.