Sid's story

Will you donate to show your support to little elves like Sid this Christmas?

Sid and his family are taking part in the #LittleElvesMatter Christmas Fundraising Appeal.

Sid is 19 months old and lives with half a working heart. His parents were devastated to find out in pregnancy that Sid’s heart condition – Tricuspid Artresia – may not be compatible with life.

Sid’s mother, Rebecca, shares their story…

“During our 20 week scan, the sonographer took a long time looking at Sid’s heart and then said she needed to get someone as it did not look like it had developed. I can remember turning to Sid’s dad, Neal, and bursting into tears. We were later told that Sid’s heart had, what looked like, a severe defect and that it might not be compatible with life. We were devastated.

We did, however ask for the sex, which beforehand we weren’t sure if we wanted to know. I wanted to leave the room with something. Something to help us get through the next few days. She asked me what I thought. I told her a boy. We both said we liked the name ‘Sid’.  She smiled at us and said “Well, you have a Sid!” Despite the terrible news we’d received, I smiled and felt this rush of love. Our boy. Our Sid.

I walked out of the room distraught. The phrase ‘incompatible with life” ringing in my ears.  We were given a follow up scan 4 days later which was followed by an another appointment at Great Ormond Street Hospital. This was during COVID and London was empty.  It was eerie. A very strange day. The night before I had been planning Sid’s funeral. I wanted to be prepared. I went to London expecting to hear that I would not be able to carry him to term.

In the scan room, I couldn’t bear to look at the screen then all I could hear was this heartbeat.  It sounded so strong. It sounded perfect. How could a broken heart make that noise?

They explained that Sid had Tricuspid Atresia with a large VSD and ASD. While I understand that he would be classed as “palliative” he had a chance. In my mind the night before I was saying ‘goodbye’ and now I was being given the chance to say ‘hello’.

We drove home with mixed emotions.

We were introduced to Little Hearts Matters at our first appointment. I immediately requested to join the parents’ Facebook group and upon joining was able to scroll through the pictures and stories of other families. It gave me such hope. It gave me the opportunity to reach out to a community that knew first- hand what I was going through.

When we welcomed Sid into the world, we spent months in and out of appointments at GOSH, which have resulted in a number of other concerns about how Sid’s heart condition effects other areas of his development. Sid regularly has seizures and is under further investigations but we are pleased with his progress so far. He can now crawl, cruise furniture and even climb the stairs! He’s known by our family and friends as ‘Super Sid’.

LHM’s support has gotten me through difficult times and still does. It’s a safe place to ask for advice, share pictures and stories. It’s an uplifting and at the same time sombre place but it’s a place that we can unite and build strength and hope. It’s a special place and one that I am truly grateful exists.

LHM has supported us by: giving us support documentation for completing DLA application; provided information booklets for nursery and giving us advice regarding feeding support.  The website is informative and provides content that is appropriate for children, parents and carers and professionals. As you create links with parents using the Facebook page, when you are in hospital it’s nice to be able to talk to people face to face and then stay in contact with them afterwards.

Sid’s next operation will be his Fontan and we know that with Little Heart Matters supporting us, Super Sid will take everything that comes his way in his stride.

It’s incredibly difficult being the parents and a sibling of a child with a congenital heart defect too, Poppy.  It’s emotionally challenging as well as physically.  As with any child, they come with a whole lot of worry but a type of worry only discovered after having a poorly child.  But having a poorly child gives you great perspective on life.  We’ve learnt, and are still learning, a lot about his condition and how life will be different for him and us.  It’s not easy, but LHM helps make it more manageable, and for that we are very grateful.

By supporting Little Hearts Matters you are supporting a small charity that makes a big difference to single ventricle families.  Families that are going through such an uncertain and stressful time.  Your support will help give families: information, hope and strength.  Their motto ‘Half a heart, not half a life” has been with our family since 8th January 2021 and will stay with us forevermore which is why we’re supporting this year’s Little Elves Matter Christmas Fundraising Appeal and we hope that you can find it in your heart to come on board in some way too.”

Will you show your support to little elves like Sid this Christmas? Click here to find out more.