When you are given the devastating news that your child has a rare heart condition, it can feel overwhelming. My daughter Georgina, now eight years old, was diagnosed with Ebstein's anomaly when she was just two. My immediate response was to start closing down from the outside world and focus my attention solely on Georgina. Having a young child, I had already thought things were hard enough. Now, I had a two-year-old with a medical condition that needed constant monitoring and required frequent hospital visits. Toddlers aren't generally that co-operative - managing one who needed to have regular medical procedures took up a lot of time and patience.
When Georgina was diagnosed, it was a trying time and I was exhausted by the decision-making. I carried around the responsibility of trying to know whether I was doing the right thing by her, based on the information I was being given. I was aware of various stories in the media around children's heart surgery, and this only added to my stress. There had been confusing headlines and scares about certain units and there was no clear information on hospitals' surgical statistics and how the NHS monitors units. It was around this time though that I heard about a project to build a website which gave parents access to clear information about children's heart surgery. Given our experience, I was keen to be involved.
I was invited by the charity Sense about Science to attend a user-testing workshop with other parents of children who have had or will have heart surgery. We were shown the website in its very early form and asked about all aspects of the site. The researchers wanted our views as parents on the language, content, images and navigation; we also tested whether it was clear and easy to understand, and advised on whether changes were needed.
The website, Understanding Children's Heart Surgery Outcomes, was launched in June and the result is a site that can be easily accessed and understood. Now, myself and my husband Martin can use this clear, easy-to-understand information to make educated decisions about Georgia's surgery. From looking at the website, we can see what the media headlines don't tell us. It is particularly reassuring to see just how high the 30-day survival rate after surgery is for all hospitals in the UK and Ireland: among the best in the world.
I also now understand what the existing data on children's heart surgery can and can't tell us. For example, the website clearly explains why hospitals shouldn't be put in league tables. Some of the best units have lower survival rates only because they take on the most difficult cases. This means you can't compare hospitals to one another. Instead researchers and the NHS monitor hospitals by comparing each one to its own predicted range - which is how well a hospital is expected to perform once the complexity of each child's surgery has been taken into account.
Right now, we are waiting for Georgina to have heart surgery. The operation will be complex and can only be done once - so doctors need her to grow as much as possible beforehand. This in itself is difficult. Georgina is limited as to what she is able to do without becoming unwell. Due to the shape and lack of pumping function of her heart, Georgina becomes breathless easily, goes blue, is always cold and struggles to gain weight. She uses a wheelchair because she is limited as to how far she can walk before she feels poorly.
As a parent of a child with a heart condition, I need straightforward information, and I need that information to be clear, even when I might be in a state of panic or distress. Martin and I now have a better understanding of the critical questions to ask - especially if hospital statistics hit the news again. We know how the NHS monitors hospitals and we find it reassuring to know there is a site we can go to for impartial and trustworthy information.
When Georgina was diagnosed, I felt the weight of responsibility at a very confusing and difficult time. I hope that other parents who face similar situations will be reassured by the resources and information now available to them.
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Guest post: "I hope we've helped others preparing for their child's heart surgery"
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MumsnetGuestPosts · 02/08/2016 11:08
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