Wednesday 16 August 2023

14 years since open heart surgery.

 Today is Stu's birthday which is also a reminder that it's 14 years since my girls both went into hospital to have open heart surgery. Each year I like to write about my girls heart surgery to remember how lucky we are to be able to share our story and to raise a little bit of awareness about heart defects! You can read our full story here.

heart with a plaster on

The short story is that I was born with a hole in my heart which didn't need surgery and it was only discovered when I fell down the stairs and broke my arm when I was about 4 years old. My girls were born with heart defects too, most likely passed down from me as they both have different father's. The girls heart issues were only discovered when Becky pushed a door shut on Ellie's fingers. Ellie's heart defect was discovered when she was in surgery to fix her fingers and we were referred to the heart specialist who went through the symptoms and despite Ellie showing only a couple Becky showed more so she was checked out too and her heart was the same as Ellie's. 

Congenital heart defects (CHDs) most common symptoms depend on the type of defect in the heart and can include: Bluish lips, skin, fingers, and toes, Breathlessness or trouble breathing, Feeding difficulties, Low birth weight, Chest pain, Delayed growth and a small size or low body weight, Abnormal heart rhythms, Dizziness, Trouble breathing, Fainting, Swelling and Fatigue.

There are several types of CHD. Some of the most common include: Ventricular septal defects, Atrial septal defects, Tetralogy of Fallot (TOF), Pulmonary valve stenosis, Patent ductus arteriosus, Dextro-transposition of the great arteries (D-TGA), Aortic valve stenosis, Single ventricle defects, such as double outlet right ventricle (DORV) and hypoplastic left heart syndrome (HLHS) and some babies are born with more than one defect.

Both of my girls were diagnosed with atrioventricular septal defects. 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. An atrioventricular septal defect is a form of congenital heart disease a term used to describe a problem with the heart’s structure and function due to abnormal development before birth.

The causes of congenital heart defects, such as AVSD's among most babies are unknown but it averages out 1 in 100 babies have some sort of heart defect so it is more common than you think.

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.

It seems ages since they last had a check up. They had their last checks, last year and are back next year. It's the longest they have gone without check up since their heart issues were discovered. It makes me nervous but at the same time I know they are OK. Things are fantastic at the moment which is completely different from what I felt this time 14 years ago!


  1. 14 years wow! Thank god all of you discovered your heart defects. It must have been so scary that both of your girlies had open heart surgery, and around the same time as well! This quote came to mind both when Craig had his transplant and you having Becky and Ellie in surgery too - 'You never know how strong you are until being strong is your only choice'.
    It's so true isn't it?! You just seem to go into autopilot mode to get through it all.
    So glad you are all doing OK now though. Here's to a very happy and healthy future. Big hugsssss xxx

  2. That must have been so hard to go through and you are remembering each year. It's great that this doesn't affect their lives and, from what you share, they seem to have a lovely and busy time, which is amazing. I'm very happy for all of you. xx

  3. I bet in some ways you still remember so many details of that day like it was yesterday. I'm sure it feels great to look at them now and know how well they are doing and that they are thriving.

  4. Thisiswhereitisat18 August 2023 at 10:34

    Wow what an emotional journey and just shows how strong you are X

  5. So awesome to hear that they are doing well ♥