Tuesday 16 August 2022

13 years since open heart surgery.

Today is Stu's birthday which is also a reminder that it's 13 years since my girls both went into hospital to have open heart surgery. Poor Stu doesn't have much luck with his birthdays, we are all recovering from Covid so his birthday meal out has been postponed until we feel 100%. I suppose it's still a better birthday than the one he had 13 years ago. lol

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.

I had a hole in my heart from when I was born and that was 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 needed surgery to fix them. Charities like Tiny Tickers want to increase early detection rates of cardiac conditions so they are not missed like my girls heart defects were missed during my pregnancies and when they were new-born's. 

Both 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.

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.

My girls really didn't show any of these to an excess. They were both born weighing over 6 and a half pounds, Becky was always thin but it was put down to that's how she was but did have blue lips and fingers in the winter but that was put down to her weight and Ellie was always sweating, even on the coldest of days she would be dripping.

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. It was the worst week of my life! They both recovered well and quickly and the following Saturday we were allowed to go home. 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. The girls have had check ups every year since, well apart from during Covid when they weren't at high enough risk to require a check up. 

Both of my girls have had checks on their hearts over the past year and we finally got to see some doctors instead of just having the scans and being sent on our way. Ellie's doctor was amazing and it turns out it's the last time she will be seen in the children's department at Scunthorpe, she will in future have to go to Hull's adult department which is fine because Becky visited there for her check up and the doctors are amazing there too! Their hearts are good, well as good as expected with leaking valves and it doesn't really effect their day to day lives. Ellie doesn't have to go back for 2 years and Becky has been given 3 years without a check up. The best news we had was the chances of them needing surgery in the future has dropped dramatically because the state of their hearts have not changed in about 5 years.

My girls

Congenital Heart Defect's (CHD's) are the most common birth defect's in the UK! If you don't know someone with one, eventually you probably will! 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. My girls are an example of that! 

Do you know anyone with a heart defect? 


  1. 13 years is a long time, but I think you remember vividly how difficult that time was. It's great that you are marking the day, an opportunity to rejoice knowing that they are healthy and fine. Sending hugs xx

  2. Yes, Graham's brother has a heart defect from birth. Star has to have her heart checked regularly because of her condition, but so far so good. Eldest daughter has pericarditis which comes and goes and may also be connected to the same thing as Star. I'm so glad that all of you were treated and have done well since. Happy Birthday to Stu...there will always be time to celebrate xx

  3. I admire your strength but the day of surgery for both girls must have been a killer. BTW do you have to have periodic checks on your heart? Saying a prayer for the family - give Stu my birthday greeting.

  4. Thirteen years! Time flies doesn't it?! It must have been a very scary and upsetting time for you.
    I'm so glad that you and your girls are all OK and able to live life to the fullest. Big hugs to you all and a very happy birthday to Stu! Hope he's had a fab day. xx

  5. I went back to read your old posts too; that is quite an ordeal! I am so happy to read that they are doing so well though. Hope your are all feeling 100% soon and that Stu has a wonderful belated birthday celebration.

  6. Oh wow Kim! That week thirteen years ago must have been so hard.I can't even begin to imagine! So happy to hear that you and your girls are doing well xx

  7. I can't even begin to imagine how scary that must have been for you. Happy that the girls are doing so well now. Hope all of you are felling better soon so Stu can have a wonderful birthday celebration.