12 years since my girls heart surgeries.

This week marks 12 years since my girls and I spent a week in hospital where they both had open heart surgery, yes both of them. 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! you can read our full story here.

I was born with a hole in my heart and thankfully didn't need any heart surgery. The hole was small enough to close up it's self. Both of my girls were also born with holes in their hearts which were missed at birth. I would say it was just bad luck but the hospitals don't have the greatest reviews and reports. Becky's I could understand being missed but Ellie's was spotted by a young trainee doctor. He spotted a murmur but was told it was nothing by a more senior doctor.

The girls heart defects were only discovered after Becky shut a door on Ellie's fingers. She needed surgery to straighten her them where the murmur was again discovered. 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 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.

The causes of congenital heart defects, such as AVSD's among most babies are unknown. Some babies have heart defects because of changes in their genes or chromosomes. We have looked into what caused my girls heart defects and nobody knows. It could be a faulty gene from me, it has to be from me as the girls both have different father's or it could just be bad luck. There is no real way to know. The girls can choose to have tests when they were older but I wasn't going to push them into it a few years ago. It is only really going to effect them when they have their own children and then they will be monitored closely.

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 and the following Saturday we were allowed to go home.

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 was unimaginable. I don't know how I did it, I really don't. 

After the heart surgery both of my girls were left with leaking heart valves but they are fit and well at the moment and I hope it stays that way. 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 past year there is only Becky who has had a check up on her heart and it is all good. Well as good as it can be with leaking valves but the detrition which happened for about 8 years after her surgery seems to have slowed down and there hasn't been any change in a couple of years which is fantastic. 

I am putting the lack of check ups on Ellie down to Covid and the fact that she isn't an urgent case. Becky was seen at the end of March and it took until the end of June to get the report from the doctor who had looked at the scan of her heart. We keep getting letters from the hospital to say Ellie is on the waiting list and will be seen in time and it's the same for me. I was told when Ellie had her check up in November 2019 that I needed a check up to and was referred to the hospital. Every few months I get a letter telling me they haven't forgotten about me.

Things are fantastic at the moment which is completely different from what I felt this time 12 years ago!