15 years since the open heart surgery.

Tomorrow is Stu's birthday which is also a reminder that it's 15 years since I was packing a suitcase not to go on holiday but to go to the hospital so both of my girls could have open heart surgery. Yes, both of them! 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, today I am just going to tell the short story.

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 and she had surgery to straighten a couple of fingers. We were referred to a 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 exactly 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.

Ellie showed none of the symptoms apart from sweating a lot. I mentioned this again and again before her heart defect was found and everyone told me some people just sweat more than others. Becky was really thin despite her eating lots, in the winter she always had blue lips and hands when she was outside but that was just put down to her weight.

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 large hole between the upper filling chambers and the lower pumping chambers 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 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 the Sunday, 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 which is quite normal. Soon after her surgery she started putting on the weight that was needed. She's still thin but nothing compared to how she used to be. Recently Ellie spent a couple of nights in hospital and when she was in A&E they checked her heart and panicked me telling me that something wasn't quite right. It turns out they hadn't read her notes about her heart problems. Her heart was checked and it's still all good. Both of the girls are due a check up on their hearts sometime over the next 12 months, I'm not looking forward to it but they couldn't care less. They take it all in their stride, it's just a day trip out for them!

Hearing that your child has a heart condition is devastating but remember that surgical outcomes in the UK are some of the best in the world and the vast majority of babies born with CHD survive into adulthood and live normal lives! Doctors now expect that around 96 percent of people who get a CHD diagnosis and receive hospital treatment will survive! There is a ton of advice and lot of support out there, I wrote a blog post all about offering advice to new CHD parents, things I wished I knew when my girls were diagnosed. My biggest pieces of advice are take one day at a time, look after yourself too and you are stronger than you think you are.

Do you know anyone with a CHD?