In the summer of 2012, when I was 22 weeks pregnant, I found out two things. A scan at my local hospital in Chesterfield revealed that I was having a boy, and that he had something wrong with his heart. While we wouldn’t know exactly what was wrong until he was born, I was obviously shocked and upset by this news. He was my first child, and I was determined to give him a fighting chance so carried on with my pregnancy, doing my best to take it all in my stride.
That November my son Lucas was born at Leeds Children’s Hospital, over 60 miles north of my hometown. He had extremely complicated cardiac issues, many of which may never be resolved. I was only 19 at the time, so a young mum with absolutely no idea about what was going to happen or how it would change my life. It really opened my eyes to the world.
Just six days after he was born, Lucas was rushed back to hospital in Leeds. His heart medication was no longer working, and his only chance of surviving was to undergo open heart surgery. The operation at Leeds Children’s Hospital lasted 11 hours, which felt like the longest and most stressful time of my life. Thankfully, he made it through. Despite his poorly heart, he was such a strong baby.
It was during this time that I first found out about The Sick Children’s Trust, being given a place to stay at their Eckersley House ‘Home from Home’ for over a month while Lucas was in hospital. It was a relief to be given such a wonderful place to stay, especially as I had no other support around me at the time. It was only a few minutes away from the ward, meaning I could be with Lucas as much as possible, while also giving me the space to learn how to give him all the medication that he would need going forwards.
The staff made me feel so welcome, constantly checking I was okay and that I had everything I needed. They got me through a tough time, being a first-time single mother. Without Eckersley House I don’t think I would have coped at all. I think my only option would been to travel all the way from Chesterfield everyday just to be with him, so I am forever grateful that they were there to help and support me. When you spend all day pacing around on the ward trying to help your child, having a place to get some much-needed rest was so important and getting a good night’s sleep gave me the strength to keep going, helping me to be at my best for Lucas in the daytime.
I have now stayed at Eckersley House on three occasions, with Lucas undergoing further heart operations at Leeds Children’s Hospital in 2015 and this year. His third, and hopefully final, surgery earlier this year was a big one, and there was a lot of risk involved. He suffered a stroke afterwards, which is something we are still coming to terms with, learning how to live with it. Lucas’s Nana, who he adores and has been so supportive through all of this, was amazing during this time, especially in helping with his rehabilitation.
Some of the cardiac issues that Lucas suffers with cannot be repaired, which will limit his lifestyle. However, to look at him you would never even know he’s had any lifesaving surgery. He is smashing life, joining in sports, and keeping up with all his friends. I don’t know what the future holds for him, but I take every day as it comes as that’s all I can do, but I feel very lucky to have him here with me after ten years.
In addition to everything related to his heart, Lucas also has ADHD, which brings its own challenges in relation to his learning. However, I know he’ll get there eventually. He now has three younger brothers too, seven-year-old Lucien, five-year-old Layton, and Hunter, who is five months. Along with his stepdad Antoni, we are all working as a team to try to help Lucas reach his full potential. After everything he has been through in the last six months, he is so much better now.
Eckersley House is such a fantastic and supportive place to be, with wonderful staff and rooms that have everything you need. It really is a place of dreams when I think about it. Everything they do to support families with a seriously ill child, giving parents like me someone to talk to, it’s amazing. When I was first there, I wasn’t judged for being such a young mother, just supporting me in the best way possible so I could help Lucas. Whenever I leave I make sure everything is tidy, and thank the staff with a card and flowers. I can never give back what they have given me, but knowing they will be there the next time Lucas has to go for surgery is truly a blessing. I can’t ever say anything bad about The Sick Children’s Trust, I just appreciate them so much and applaud what they do for people.
Melissa Petrillo, Lucas’s mum