Maximus's Story

My name is Stacey, and this is a story of an amazing heart warrior.

I enjoyed my pregnancy as much as I could I had more scans than a normal pregnancy and was due to be induced at 40 weeks.

At 37 weeks we went for our final scan, and we were told the worst news our baby was in heart failure. He had fluid around his heart, lungs and stomach and he was barely moving. We were told he had to be born today but that he wasn’t going to survive. Our hearts were broken, we had come so far, and we were going to lose him.  I was quickly wheeled into theatre and at 4.51pm our beautiful baby boy was born in better condition than the doctors could have imagined. He was breathing by himself for a good hour before he was put on a ventilator. He was perfect.

After 9 days in St. George’s hospital Max was transferred to The Royal Brompton hospital and the journey began. Max was very unwell and needed surgery, but we had a problem, doctors didn’t think that surgery was an option for him and suggested we put him into a hospice and withdraw his care. We sought second opinions from other hospitals and after a lot of fighting we finally met the most amazing surgeon. He told us that it was risky, and the survival rate was 10% but he believed that he could give Maximus a chance of life.

After 12 long hours of not knowing if our baby would be coming back to us, he came up from theatre and he looked beautiful. His surgeon had worked a miracle and had proved everyone wrong.

All In all, Max spent 7 months of his life in intensive care at The Royal Brompton hospital. It wasn’t easy he had countless surgeries from liver to tracheostomies and a horrifying weekend of cardiac arrests. After a long 7 months he was finally ready to be transferred to our local hospital and the transition to coming home began. He can home for the first ever time, for just the day, on Christmas Day.  It all happened so quickly that we had no Christmas tree or Christmas dinner. We didn’t care we had all we needed being at home – our baby, with no nurses, just us. He finally came home properly in January, and we were finally complete.

Seven years on we have the most amazing boy.  We were told so many times Maximus wouldn’t lead a normal life; he would always be tired, never eat by himself, never go to school. We have quite the opposite child, one who is up at 4am most days, eats like there is no tomorrow and loves going to school.

Being a heart mum is my superpower.  I never in a million years knew I had this much fight in me. It’s given me such a different perspective on life, and I appreciate things so much more. Is it hard at times? Yes, having to make life or death choices without knowing if it’s the right thing to do. Sitting for endless hours in A&E and being away from home for weeks, sometimes months, during a hospital admission. Seeing your child in pain and wanting to take it all away. But for my son I will do it time and time again. I am so proud to be his mum and without him I wouldn’t be who I am today.