Tuesday 18 August 2020

11 years since their heart surgeries.

This week marks 11 years since my girls and I spent a week in hospital and they both had open heart surgery and each year I like to write about it to remember how lucky we are and to share our story to raise awareness about heart defects!

If you don't know our heart story you can read the full story here. I was born with a hole in my heart and I didn't need surgery and both of my girls were also born with holes in their hearts which were missed at birth. Becky's I could understand being missed but Ellie's not. A young trainee doctor noticed a murmur but it was dismissed by an older doctor. 

The girls heart defects were only discovered after my youngest jammed her fingers in a door and needed surgery to straighten her fingers. It was a freak accident but that accident saved both of their lives. If Ellie didn't have that accident they could have been dead by now. I have been left with the thought of all the what if's?

Both of the girls had Atrioventricular septal defects (AVSD's). An atrioventricular septal defect results in a is a large hole between the upper filling chambers (atria) and the lower pumping chambers (ventricles) of the heart. The hole allows more blood to flow from the left side of the heart to the right. This increases the pressure of the blood travelling to the lungs, making the right hand-side of the heart work harder and function less well.

We went into the hospital on Sunday the 16th of August, Becky had her open heart surgery on Monday and spent a night on PICU, Ellie had her surgery on Tuesday and took Becky's place on PICU. They both recovered well and quickly. Ellie probably too quickly. She was trying to copy off the Cbebbies show Waybuloo doing yoga a day after major surgery. 

It was honestly the worst time of my life. I did write about the reality of open heart surgery but even that can't get across how I was feeling. Taking one child for surgery is bad enough but taking another less than 24 hours later. I don't know how I did it, I really don't. I have felt plenty of guilt over the years knowing the chances I passed the heart defect to my girls, it has to be me because they both have different fathers. We had basic genetic tests done but it was just put down to bad luck for now. The girls can choose to have tests when they were older but I wasn't going to push them into it now. It is only really going to effect them when they have their own children and then they will be monitored closely.

The girls are fit and well at the moment. Their heart issues don't really effect their day to day life apart from in the winter when Becky feels the cold more and her lips sometimes have a blue tinge to them.

Over the last year they have both had their hearts checked and not much has changed with them but the hospital did say that if there was no more deterioration they might not need surgery again which was good to hear but time will tell. The person who saw Ellie said I should go and get my heart checked. Partly for their research and partly just to keep an eye on me. The last time I had my heart checked was when they discovered Becky's heart defect and that was just to compare our hearts. I had a leaking valve but it wasn't as bad as the girls. I was supposed to have an appointment early this year but Coronavirus happened and I got a letter saying I will be called in when it is safe to do so. That's fine with me.


  1. What an emotional journey but good to see that it is going ok for you x #mmbc

  2. So scary, even with just one child but having to go through it twice, I take my hat off to you. You can't beat yourself up over it or blame yourself. Sometimes things just happen for no reason ! xxx

  3. I'm so glad that both your girls are doing so well. I can imagine it must have been so hard with both of them having their heart surgeries on consecutive days - having one child in hospital having surgery is hard enough let alone two. What a good thing that Ellie jammed her fingers in the door though and the girls' heart conditions were detected. I know it is easier said than done to not feel guilty, but your girls' hearts are not your fault anymore than your heart defect is either of your parents' faults. You had no control over that x

  4. Hi Kim, that must have been utter hell. When my son had to be put under for a muscle biopsy I was a twitching wreck, so how you coped with having two girls go through heat surgery withing hours of each other I don't know. ingers crossed your heart is okay and that your girls hearts continue to stay good and strong.