Guest post: "I hope we've helped others preparing for their child's heart surgery"
Alex Smith says the lack of clear information added to her stress when her daughter was diagnosed with a heart defect - so she got involved with a project to improve resources
Posted on: Tue 02-Aug-16 11:08:26
(3 comments )
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.
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.
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.
By Alex Smith
Six years and five days ago, my nine day old DD had her first open heart surgery. She has pulmonary atresia , mild Ebstein anomaly of the tricuspid valve. I remember the confusion of the paediatric heart units of the time. We were first taken to Oxford where surgery had just been stopped due to poor survival rates. We didn't have a choice , she needed surgery somewhere , so she could survive her first couple of weeks. So we were blue lighted to Southampton where she had a 12 hour operation. They battled to give her the best start they could, she was on and off bypass three times, but they maintained a normal circulatory system and put in a new valve to her lungs. That time is a strange mix of clear as day memory's and a swirling mist of moments too emotional to remember clearly. All the nurses ( except one , but that is a different story) were so supportive and caring, the doctors and consultants were exceptional. They saved her. They fought for her.
Last Christmas she had a new valve fitted as she had outgrown her last one. She gave us a few scares, but we got through and now she is running and skipping around . To see her a her school sports day just brought home to me how ill she had been before the repair . She was running in races having the time of her life ! We are so proud of her. I hope Georgina gets her surgery soon and her quality of life gets considerably better.
I will definatly be checking out the website, and I hope it helps parents and family's understand risk and performance better.
All my best wishes for Georgina's future.
My dd had her first heart surgery at 6mo and has a lifetime of surgery ahead but it's not life threatening or life limiting so our future is bright x
I hope Georgina gets the surgery soon thank you for this post!
Thank you for this!
My DS was diagnosed with a hole in the heart last week and whilst we were told that it was routine surgery and he will be fine once its done with a less than 1% risk factor - for me its still scary that my 2 year old will have to have open heart surgery and be on a heart and lung bypass machine.
We were told we would have a nurse assigned to us but that was it.
So home to the computer to look up accredited information about the op and to try and find info about hospitals and surgeons. Like you said there is nothing clear out there. I didn't come across the website you are talking about - or your article until now. I did look before on MN but there was no section on more serious health issues that I could see.
Off to look at the website now. Thank you