Lola was born on Christmas day last year. Ross and I were absolutely over the moon and so excited to be first time parents. It wasn’t long though before I began to worry that there might be something wrong with Lola because she wasn’t feeding very well. By the time she was three weeks old, she had lost so much weight that the health visitor referred her to the GP straight away. The GP told us he could hear a heart murmur, but reassured us that heart murmurs were quite normal in babies (especially as the foetal circulation sometimes takes longer to close down in some children) and there was nothing to worry about. He referred us to the local hospital for further tests.

At the local hospital, the doctors did an ECHO and said that they thought Lola had a hole in her heart, but that we would need to see a heart specialist to confirm this. That same afternoon, we were seen by a cardiologist at the specialist centre and he told us that Lola had a condition called an atrio-ventricular septal defect (AVSD) – a large hole in the middle of the heart.

We were devastated by the news. Everyone wishes for a healthy baby and, although you do hear of children being born with congenital defects, I guess it’s one of those things you think always happens to other people. Now we were ‘one of those people’. I found it really difficult to accept – it felt like my whole world had just turned upside down. Even now I still have days when I think “Why did this happen?”

I have to say though, that the cardiologist was really good with us. He explained everything really well and went through what would happen next. He told us that Lola’s heart condition was treatable and that it could be repaired so that her heart worked like a normal heart. We were very grateful to him for being so patient with us and letting us ask as many questions as we wanted.

“I remember taking lots of pictures of her – I was just so scared that I may not get a chance later.”

While we were in hospital, Ross and I tried to get as much information as possible. I remember meeting another mum on the ward who also had a child with a heart condition. Her son had just had surgery and was back in the ward recovering. She talked to us about what they had been through and let us see her son’s scars. It really helped to prepare me for what to expect and it was good to find out how she had coped, what she had been through, what it was like in intensive care etc. It helped to put my mind at rest a little bit and I realised that I was not going to be going through this on my own.

Back at home, I was still very much in shock and found it difficult to come to terms with the heart condition and what we were facing. It was a really difficult period, but at the same time I wanted to make the most of our time with Lola before she had her surgery. I remember taking lots of pictures of her – I was just so scared that I might not get a chance later.

At around nine weeks, Lola really started to deteriorate and wasn’t feeding much at all. When the cardiologist saw her, he scheduled her in for surgery at the first available slot and we were in the hospital two weeks later.  On the morning of her operation, the whole family had a cuddle with Lola and said their goodbyes. After the longest six hours of our lives, we finally received a call from the nurse to say that Lola was okay and that we could go up to see her in the intensive care unit (ICU). I remember being really nervous walking into the ICU – Ross and I were holding hands and my legs just went to jelly. As soon as I saw her, I broke down – it was just so nice to see her!

The surgeon explained to us that although the surgery had gone well, they had discovered that her mitral valve was leaking and would need to be repaired at some point in the future. The next day, however, they found that Lola’s mitral valve was already deteriorating and it soon became apparent that they would need to repair it straight away. So only two days after her first operation, Lola was yet again wheeled back into theatre. It was all a bit of a whirlwind and I felt terribly anxious – would Lola be able to cope with another major open heart operation so soon?

After another long and agonising morning we received a call from the nurse to tell us Lola was back from surgery and was doing well. I can remember that moment so vividly and it is one that will never leave me. To be honest I didn’t think I’d ever get to see our precious little girl again. The cardiac team explained to us that during this operation they’d had to replace Lola’s mitral valve with a mechanical one. This was something which we had been advised of as a possibility before the surgery but they were keen not to do this at such a young age, as replacing the mitral valve in a baby of Lola’s age at the time (11 weeks) was very risky. We were also told that Lola would need further open heart surgery as she grows to replace the mechanical valve and that she would need to take warfarin (an anticoagulant) for life. It was all so much to take in, I remember sitting there willing our little girl to pull through the next few days without any problems.

Thankfully Lola did pull through and there were no more complications. Two and a half weeks later we took her home and were amazed at how quickly she recovered considering everything she’d been through. In fact, she was soon sitting up by herself, rolling over and developmentally everything seemed on track. I was most relieved about this as we had been really concerned about the effect on her of having such major surgery when she was so young.

Recently, Children’s Heart Federation gave us an electronic home testing kit called an INR machine to monitor Lola’s blood clotting levels. This is necessary because Lola has to take warfarin (medicine to stop her blood clotting), due to the mechanical valve she has in her heart, and we need to make sure she gets the right dose. Before we had this machine, we had to visit the hospital every week to have Lola’s blood checked. Now we have our own machine, we can do it at home and it is all very easy. It’s given us a lot more freedom and flexibility. For example, I can just take the machine with me when I want to visit my mum and dad (Lola’s grandparents), whereas before we were having to plan our trips around the hospital visits.

Our journey over the last seven months has been a long and challenging one. When I look at Lola now, I am amazed at how much she has been through – she really is a little star, a real inspiration. And I am really grateful for all the help and support we’ve received from everyone through it all (from the cardiac team at the hospital to the support organisations). It’s great to know that there is support like the Children’s Heart Federation out there, and that I can just pick up the phone when I need to talk to someone.