I broke down in tears on the chair when they told me my baby, Luna, had a heart condition. I was so lucky my partner, Liam, was there by my side because it is just not something you can hear on your own at your 20 week scan.
Luna had very little chance of making it to birth because her heart wasn’t working properly. The condition she was diagnosed with, hypoplastic left heart syndrome (HLHS), meant her heart would be underdeveloped and not pump blood around her body effectively. For the next 18 weeks we both remained level headed, understanding that Luna’s condition was very severe. We didn’t decorate or get her room ready, we bought very little and just waited. It was all we could do.
Over the weeks that followed, we were referred to Leeds General Infirmary where Luna and I would be looked after. It was at this point that we were told what the future looked like for Luna. She would need at least three heart surgeries to help her heart to work properly and we would face spending a lot of time away from our home in Hull. Eckersley House was suggested to us as a place we could stay nearby to our daughter. It was just a few minutes’ walk from the hospital, in fact we could see if from where we stood. This allowed us to focus on the here and now, rather than worrying about how we would stay together with our baby.
Despite everything we were prepared for, Luna was born weighing an incredible 7lbs and she looked healthy. We knew though that the surgery would happen soon after she was born though. We spent just hours with her before she was taken down for her first heart surgery. It was her most critical surgery and it went well.
Since that operation, Luna has been recovering in hospital and we have been staying at Eckersley House. It’s a ‘Home from Home’ run by The Sick Children’s Trust and it has been extremely useful as it’s meant we have not been far away from Luna. If we need to be there, we can. The kindness shown to us by giving us a place to stay has really helped us while our baby has been in hospital.
We’re not sure how long we will be here as heart babies all progress at different rates, but Luna is doing well so far thankfully. Hopefully we won’t be here for much longer but we know that the road ahead is not an easy one to travel. The next two surgeries she needs are crucial and we are nervous about them but our daughter is strong and fearless.
When we do come back for Luna’s next surgeries we feel reassured knowing there is somewhere to stay nearby at Eckersley House. It makes it easy for us as we don’t have to commute and can be there for Luna. If I wasn’t by her side I would be miserable and worry. Not only that but being in hospital is very mentally draining as you are always worried about the beeping and the numbers on the monitors around your child. It can make you tired. Eckersley House is a space away where you can rest together. I don’t know what I would’ve done without Liam being here with me. He has been such a massive help to me and kept me calm when things have got tough.
Luna is proving everyone wrong and we are so pleased. It’s not been easy, but the amount of support we have received from The Sick Children’s Trust, the hospital and also our friends and family has been overwhelming and we appreciate every single thing we have been given.
While we watch our beautiful, adorable, amazing fighter battle every day, it really helps just knowing that there are people around for support.
Amy Grayson, Luna Ripley’s mum