The day after Grace was born, I began to notice that she was breathing quite rapidly and that something generally didn’t seem right. When she was four days old, she was still panting, couldn’t feed properly and kept falling asleep when I tried to breastfeed her. After some persuasion, I finally managed to get a junior doctor to look at her. Within minutes of listening to her chest he went to get a paediatrician. The paediatrician said that there might be something wrong with Grace’s heart but reassured my husband and I that it was probably something minor like a hole in the heart.
“It was like having your worst nightmare come to life – only this time I knew that I wouldn’t just wake up and that was real”
At first, I was completely devastated by the news. It felt like the end of the world and I spent two days just crying and worrying. However, the local doctors kept reassuring us that it was probably just a minor condition. By the time we were sent off to Alder Hey Hospital so that Grace could have an echocardiogram, I was feeling much stronger. Little did we know what lay in store for us.
The night before we went up to Alder Hey, Grace was really poorly – she was going blue, not feeding and on the way to Liverpool she grew worse. As soon as we reached the hospital, it was clear that she was in a really bad state. This is when we found out just how serious her condition was. The doctors explained that Grace had several complications with her heart and would need surgery immediately, if she were to survive. I can’t begin to explain how I felt. It was like having your worst nightmare come to life – only this time I knew that I wouldn’t just wake up and that it was real.
“Watching your baby go through something like that is agonising – that was the first time it properly dawned on me that we could lose her”
I think I just went into complete denial. I remember the cardiac liaison nurse giving me information and books all of which I promptly handed back to her! I simply refused to acknowledge any of it. In the meantime, Grace was being prepared for theatre and we just had time to take some pictures of her first. The staff asked us then if we wanted to have her christened before they took her in but I said no. I was determined she would be christened at home.
That was truly the most horrendous day of my life. We had come to Liverpool expecting to be back at home with Grace later that same day. Instead, we had to cancel our flight and what we had thought was going to be a day trip to the hospital to confirm a minor condition, turned into a six week long stay.
Those six weeks at Alderhey were really difficult as we waited for Grace to recover from her initial surgery. There was one point when they had to resuscitate her in front of us. Watching your baby go through something like that is agonising – that was the first time it properly dawned on me that we could lose her. She managed to pull through though and we were finally able to take her home.
Ever since that time, Grace has been in and out of hospital for various procedures as well as further major heart surgery. Last year was particularly difficult because she contracted endocarditis twice, and ended up spending seven months of the year in hospital as a result.
“I never would have dreamed that we could have come this far”
Thankfully, this year things have finally started to look up for Grace. It’s such a pleasure to see her as a happy, fun loving three year old who can enjoy playing and running around just like any other toddler. I never would have dreamed that we could have come this far – I’m just so glad that she’s here, being a little monkey and telling us that she wants blue shoes for when she starts pre-school in September!
We know that Grace will continue to need ongoing treatment and that her heart can never really be ‘corrected’. That’s probably the most difficult thing to deal with – the fact that we can never really put closure on it because Grace will always need to keep going back into hospital. For now though, we’re just enjoying Grace being a normal little three year old.
“Knowing that there is someone at the end of the line who’ll listen and who has a good understanding of heart conditions is still a great comfort to me”
To be thrown into a whirlwind journey like that straight after Grace was born was not easy to say the least. In the early days, I desperately wanted to speak to someone who could understand what I was going through. Fortunately, I soon managed to find the Children’s Heart Federation and telephone their free infoline. They were able to give me a wealth of support and I was able to talk through my fears and concerns, and get advice and information on different aspects of Grace’s care. They were also a tremendous help to me during a particularly difficult time when I was really worried about Grace’s condition and felt that I needed a second opinion. Knowing that there is someone at the end of the line who’ll listen and who has a good understanding of heart conditions is still a great comfort to me.
Since the 2008 publication of her story Grace’s family have updated CHF on her progress.
Grace has started school and is loving it! She enjoys swimming, ballet and tap lessons, ballroom dancing and loves singing and dancing. She will also tell you that she’s going to be Princess at Disney when she grows up!
Grace’s mum thinks that she should be on the stage. . . Everyone at CHF would have to agree.
“She has been through so so much but continues to light up our life.”