Soon after he was born, I noticed that Freddie’s fingers and toes looked a bit blue. I mentioned it to the midwife, but she was quick to dismiss it and so I thought nothing more of it and took Freddie home. However, Freddie started to lose weight quickly and he wasn’t breast feeding properly. Alarm bells started to ring and when the health visitor came to see Freddie at about two weeks old, she knew straight away that something wasn’t right. She arranged for us to see the GP later that afternoon.
“I remember feeling really guilty – thoughts like ‘What did I do in my pregnancy to cause this?’ kept running through my mind”
Barely two hours after the health visitor had left, there was a knock on the door and I was shocked to find our GP standing in the doorway! Obviously, whatever the health visitor had said had concerned him enough to decide to make a house call straight away. He diagnosed jaundice and said Freddie would need light therapy for it. Then he listened to the heart. He said that he could hear a heart murmur – something was wrong with Freddie’s heart and we would need to get it looked at immediately. I can’t describe how hard it was to hear that. I just remember my knees going weak and almost collapsing to the floor. My mind went blank as I tried to take in what he was saying.
After the GP left, I think I just fell apart – I was a complete and utter mess. It felt as though I’d closed my eyes the night before when all was still well in our lives, only to wake up to a real life nightmare – it was horrible. I remember having to phone my husband David at work and tell him that our baby had a heart problem. It’s not until I actually said those words out loud that the reality of it hit me. Something was wrong with Freddie’s heart. I remember feeling really guilty – thoughts like
‘What did I do in my pregnancy to cause this?’ kept running through my mind.
At the local hospital, they treated Freddie for the jaundice and then did an ECG. They diagnosed the heart problem as a hole in the heart and arranged an outpatient appointment to see a specialist. Everyone was very reassuring and we were told we’d soon be given an appointment to see a cardiologist at the specialist cardiac centre. Sadly, the calm didn’t last for long as soon after this we received a call from one of the top consultants at the local hospital. He’d had a look at Freddie’s ECG results and wanted to see us straight away. He said they were expecting us to be there within the hour! Thankfully, when the consultant examined Freddie, it wasn’t as bad as he had originally thought. He went through everything very clearly and explained to us that basically we were facing a waiting game – that is, we would have to wait and see if the hole would close on its own before considering surgery.
Over the next couple of years, we made frequent trips to the heart centre as they monitored Freddie’s hole in the heart. Freddie was quite poorly once he started to crawl and walk, possibly because his heart was having to work harder. He would pick up infections really easily too and was always having to take antibiotics. Over time, Freddie became more and more unwell, the chest infections got worse and we found ourselves in and out of the local hospital a lot.
Then came the day when we had to face what we had been dreading all along. It was during one of the follow-up appointments at the heart centre when Freddie was about two and a half years old. The doctor did an ECG and ECHO as normal, but this time, instead of telling us that everything was going ok, he said that he might have to refer Freddie for surgery. We were absolutely floored by the news. Up until then, we’d learnt to come to terms with life and treating Freddie with medicines. But this was unknown territory – they were putting surgery into the melting pot now as well. They were going to open up his chest! The hospital was fantastic though. They arranged a pre-op visit to the ward and an appointment with the surgeon and the cardiac liaison nurses, which helped to put a lot of our fears to bed. Fortunately, when the time for surgery came, it all went really well. Freddie was in intensive care for only two days after the op and we were able to take him home soon after. He went on to recover quickly and we were able to gradually wean him off the medicines.
I’m delighted to say that Freddie has been as fit as a fiddle ever since his surgery. He still needs his rest and is normally tucked up in bed by 7pm every night, but he’s not restricted in any way. He’s a happy, healthy five year old with a smile that would brighten up anyone’s day!
“Children’s Heart Federation has been part and parcel of Freddie’s journey.”
It’s an amazing feeling, thinking back through all the ups and downs we have come through since that fateful day when we first found out that there was a problem with Freddie’s heart. In the beginning, I remember how scared I was and how lost we all felt. The support we received from Children’s Heart Federation during that initial period was invaluable. Ever since I found out about them, they have been a real crutch for us as a family. They have given us advice and information every step of the way and put us in touch with other parents and support networks. When Freddie was due to have his surgery, Children’s Heart Federation sent us a boy version of their Molly’s Dolly, which he cherishes and has named ‘Little Freddie’. In short, Children’s Heart Federation has been part and parcel of Freddie’s journey.