CHD awareness is a cause that is very close to my heart and we’ve been doing our little bit to help raise awareness over this last month. Jessica’s story is one of those featured on the Big Tick campaign by Tiny Tickers which focuses on improving detection of congenital heart defects at the 20 week scan in order to improve outcomes for those babies. Jessica’s photo was also in the November issue of Let’s Knit magazine as Little Hearts Matter was their charity of the month. Her photo, along with those of other children with hypoplastic left heart syndrome (HLHS), is also going to be one of those featured in a calendar produced by the Charlie Jones Foundation.
Earlier this week we went to a cardiac consultation review event run by NHS England about their proposed standards for the future of children’s and young adult’s cardiac services. I’m still processing the information from this and my thoughts but will be submitting them in the next few days as part of the consultation process which you can also participate in here.
I recently read this post from heart dad Chris, whose son also has HLHS, about the responses heart parents often receive and I love his ‘heart bingo’ card. Thinking back to the kind of comments I’ve heard since Jessica’s arrival, I could tick off 19 out of the 24 on the card . A bit of fun, but also another good way of raising awareness and helping educate others about what life as a heart family is like.
For those who haven’t encountered my heart families linky before, here is a summary of what it’s all about:
Heart to heart is a monthly link-up for heart families to share stories about their journeys. My eldest daughter Jessica has hypoplastic left heart syndrome and I started blogging about her heart journey a few weeks before she was born. Since her arrival, we have got to know other heart families, in person through our stays in the hospital, but also online through social media and blogging. It has been hugely helpful for us as a family to hear stories of other heart families which have helped give us hope and encouragement, but also made us realise that we are not alone in our struggles; that we are part of a community of other heart families. I started this linky in the hope that sharing stories would help other heart families out there too.
The linky opens on the 15th of each month and stays open for a week so there is plenty of time to share. You can share old posts or new posts, updates on how your heart child is progressing, poems, advice – whatever you like as long as it is related to life as a heart family. If you would like to add the code below to your post that would be great and please do visit other posts in the link too! Please note that my badge has recently changed with the redesign of my blog last month so do make sure you have the code for my current badge.
I’m linking up my post from earlier this month about the 20 week scan and how having Jessica’s heart condition detected then saved her life. Looking forward to reading your posts this month too.