Support Our Helping Hearts Appeal
Every day, 12 babies are born with congenital heart disease (CHD) in the UK. Every day, new families are told the devastating news that their baby is facing open heart surgery and a battle to survive. And now their CHD journey is made even more difficult by the global coronavirus pandemic.
Imagine going to your 20-week pregnancy scan and finding out your unborn baby has a serious, life-threatening heart condition. Then imagine your baby is born and needs to have life-saving surgery within the first few weeks or months of life.
Now imagine all of the above, but having to face these challenges alone because of coronavirus restrictions. You have to attend your 20-week scan alone. You receive the devastating news of your baby’s diagnosis without the physical support of your partner or a friend or family member in the room. Then, while your baby is undergoing surgery in hospital, only you can stay with them. Imagine that the nurses and other healthcare professionals can’t give you a hug or even squeeze your hand, because we’re in the midst of a global pandemic.
During the past nine months, around 2,000 women have received a suspected diagnosis of congenital heart disease (CHD) at their 20-week scan, alone. Usually, up to 10 babies have an operation to fix their heart every day. Although the number of planned surgeries has reduced during the pandemic, hundreds of babies will still have had heart surgery during the past nine months, with parents and families separated during hospital stays.
At a time when these parents need comfort the most, there is no one to hug. Unfortunately, we can’t change this. But we can make sure parents know they’re not alone – that we and the heart community are always here for them. That’s why we’ve created hug buttons to give parents a virtual hug when they need it. They can take this button with them into hospital and to appointments to remind them that they’re not alone. It can be given to siblings, placed under pillows, or kept in pockets.
A £10 donation, will provide one family with a virtual hug. Your donation will enable us to send one of our family support packs to a heart family, along with a hug button. And when you make your donation, you can also leave a message of support for that family.
Please donate £10 now and don’t forget to include your message of support in the text box. We will write this message on the postcard that accompanies the hug button and send it, along with our support pack, which is full of advice from other heart parents and health professionals about CHD and being in hospital, to a family who needs it.
You can also donate by text – just text HEARTHUGS to 70085 to donate £10. Texts cost £10 plus one standard rate message and you’ll be opting in to hear more about our work and fundraising via telephone and SMS. If you’d like to give £10 but do not wish to receive marketing communications, text HEARTHUGSNOINFO to 70085.
Danielle and Joe’s Story
Danielle’s first pregnancy with her son Lennox was a happy time, and uneventful. She says, “After a lovely ‘normal’ birth we got to take our gorgeous baby boy home! But, on day three, I noticed something wasn’t right with Lennox. I couldn’t tell you what it was, but I just knew something wasn’t ok.”
After a call to the birth centre, Danielle and her husband, Joe, were told to take Lennox to A&E. There, he was treated for dehydration. As he deteriorated, Lennox was rushed to a resuscitation room. “They performed an echo scan and I heard the word ‘cardiac’ being shouted,” Danielle says.
Once Lennox was stable, a paediatrician explained to Danielle and Joe that they had worked for two hours to save him. “We were told that he had a condition called critical aortic stenosis. Lennox was too poorly to have the operation that night, but he had it the next day. We were in the hospital for ten days. This was the scariest time of our lives and we are so very grateful for everyone who helped save his life.”
Lennox is now two years old and is doing amazingly. “He has A LOT of energy – you’d never know that he actually has a congenital heart defect. I’m just in awe of him, the proudest mum ever.”
Earlier this year, Danielle discovered she was pregnant again. But, at her fetal medicine scan, she received some devastating news. This baby, a little boy, also has congenital heart disease (CHD). “We were obviously so upset and I was just truly gutted. The one thing I had been saying during this pregnancy was that I just couldn’t wait to take my healthy baby home and enjoy all the newborn moments with no anxiety.”
An initial diagnosis of critical aortic stenosis (the same as his big brother) was eventually changed to hypoplastic left heart syndrome. “I often still think, ‘Why me? Why can’t I just take a healthy baby home?’ After Lennox that was all I was hoping for. But this is our new normal and that’s ok. We will do whatever it takes to get our baby home.”
Pregnancy during the pandemic has made Danielle and Joe’s journey even more challenging. Coronavirus restrictions meant that Danielle had to attend her pregnancy scans alone. “Both times now I’ve been given bad news and both times I’ve been alone. I’ve had to call Joe in from the car park.”
Danielle wants to share their story to help others in similar situations. “Following other people’s stories and journeys has helped me immensely. If I can offer the same to someone in return, I’d love to. Tiny Tickers is an amazing charity – so informative and supportive.”
What does a family support pack contain?
One family support pack contains:
- Two information booklets, ‘Some things we’d like to tell you about congenital heart defects’ and ‘Some things we’d like you to know about going into hospital’
- A hug button and postcard, with message of support
- An introductory letter with links to more resources (for example, our family experience videos and an invitation to join our Facebook parent and carer support community)
- More information about our charity
- A pair of bonding squares, which can be used in hospital (these have been donated by our generous supporters and are subject to availability)
- Think HEART & Think 20 information cards
- A colouring sheet for siblings
Our support has never been more needed. We provide advice, information and support for families who are going through the unthinkable. Please donate £10 to provide one family with a virtual hug when they need it.