This Valentine’s Day, mum Daniela explains how the Claire House baby group helped her when her son Louie was diagnosed with a heart condition.
“Louie was born with a complex cardiac condition – basically he has half a working heart. He wasn’t diagnosed when I was pregnant, so it came as a massive shock when he was born.
He’s now 14 months and is a happy little chappy, you wouldn’t even know he has a heart condition. He’s had two open heart surgeries and will require another.
When he was born, his condition wasn’t picked up for a couple of days. He had quite a traumatic entry into the world, so they put the bruising and blueness down to that.
I basically had to raise the alarm. I always remember people saying to me about mother’s instinct and I thought I haven’t got that, but you instinctively know when something isn’t right.
The doctor came to see him and he was rushed to neonatal care. It was a massive shock, but we are here to tell the story and he is doing well.
I heard about Claire House from the cardiac nurse at Alder Hey. I was going ‘I’m the only person in the world this has happened to’ and she said, ‘no you aren’t’.
At first I just refused the leaflets and books I was given about his condition and said to my husband Josh to take them away from me.
But as time went on, I was just so scared he was going to get ill. When he was really poorly, I just didn’t want to leave the house. The nurses said you need to go to the baby group at Claire House, there will be parents in the same situation with a similar mindset.
I didn’t know there was such thing as a baby group. I’d volunteered and done things for Claire House but my perception was that it was for severely ill children and that is what scared me.
But I gave it a go. At the group, it was nice and clean and everyone was amazing and so welcoming. I loved going. I’ve got very limited family support as my family live in Malta and Josh’s family are in the Peak District. It sounds so simple but just to have someone who’d hold Louie whilst I had a cup of tea meant so much.
There were other parents of a boy with half a working heart. He’s a year older than Louie and it gave me peace of mind to talk to parents who have been through similar trauma.
I also got help from the physios. When Louie struggled a little bit with his milestones, like sitting up, they said ‘here are some exercises’ and the next time I went he’d done it.
The play specialist Rosie is so creative. She helped Louie make pictures and we’d give them to the grandparents. I love those tiny handprints from when his hands were so small. It’s just stuff I wouldn’t have time to do but I’ve got them now.
Now Louie’s coming on really well. Every day is special. He’s a social butterfly and loves being the centre of attention. He loves Peter Rabbit, In the Night Garden and YouTuber Miss Rachel always calms him down at appointments.
I am so grateful that Claire House is on our doorstep. You take these things for granted when you don’t need them but there is a lot of support out there, you just need to accept it.
I’m now part of a family I never thought I’d be part of and that’s all because of you.
