Friday 8 February 2013

Our #CHD Story....Part One! #CongenitalHeartDefects #AwarenessWeek

Raising awareness of congenital heart defect's is a cause close to my heart pardon the pun. It has majorly affected mine and my girls life. Here's our story first part today and the rest tomorrow. I don't pretend to be an expert. I'm not the most savvy person with medical terms but this is how things went with us. 

I was born with a hole in my heart but it wasn't discovered until I had a stay in hospital when I was 4 years old after falling down the stairs and breaking my arm. It wasn't serious enough to operate on but I had yearly check up's until I was about 14 and they said only to come back if I had any problems. Which I haven't so far, touch wood!!

Fast forward to February 2009.

One night the kids were messing about at bedtime and Ellie managed to get her fingers jammed in Becky's bedroom door. 

 While at hospital under anesthetic getting her fingers fixed they realised Ellie had a problem with her heart so we were referred to the Freeman Hospital in Newcastle, one of the best hospitals dealing with hearts in the country in my opinion!! We got to see the amazing Doctor Richard Kirk. (my hero). Ellie had an Echocardiogram (an ultrasound scan of the heart) and it was found she had a Atrioventricular septal defect (AVSD)

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.

We spoke to Dr Kirk and it turned out Becky showed more symptoms than Ellie so he did an unofficial scan, off the books just to satisfy his curiosity. It turned out Becky had the same problem with her heart as Ellie. 

We were sent home to take it all in and wait for an appointment to come for more tests. Obviously when we got home we looked on the internet and found all the signs and symptoms and Ellie had none of them apart from sweating a lot, she would sweat even on the coldest day, when she was sat still and especially when drinking her bottlesBecky on the other hand had more of the symptoms. She was think, her lips used to have a blue tinge to them, she always felt the cold and would always get colds.

We were told to make it all official we had to go to our GP for Becky to be referred. The GP checked Becky over and said there's nothing wrong with her heart. I'm not referring you. hahaha! I went crazy! I said it was just a formality that I had to get a referral. From that day on I had no faith in my local GP's.

Becky had her official echocardiogram and Dr Kirk said the girls hearts were almost identical defects and all. 

Both my girls were scheduled to go into hospital on the 1st of June 2009 for a transesophageal echocardiography each. It's where a probe is put down your throat to get a better look at the back of the heart. Not nice at all.

Ellie had her pre-med which was so funny. Imagine a drunk
 two year old and that was her. She went for her anesthetic first and was back within about 40 minutes. The nurses said she would sleep for a couple of hours. Yeah right, she was awake in about 10 minutes, eating after 20 and playing in outdoor play area after about 30 minutes. lol

 Becky was next and was away for about the same time but came back and did sleep for a couple of hours. Poor love!!

The doctors came round and said they found nothing new with the tests but yes they needed open heart surgery but we could go home that evening. We were out of there as soon as we could.

The plan!

We had lots of phone calls over the next few weeks to arrange what was going to happen and when and finally at in the middle of July we got to go and meet the surgeon Mr Griselli who is one of the best people ever!! We signed the consent forms. He explained the risks of not having surgery and having it. He said if they don't have surgery they would be lucky to see their late teenage years. The heart would just give up. Not having surgery was not an option!! 

The plan was for Ellie to have surgery first then 2 days in intensive care and then Becky to have her surgery and take her place in intensive care then spend a further week in hospital sometime in August 2009Simple!


  1. I will be back tomorrow to read the rest.
    Can't imagine what you and your girls have been through.

  2. Wow what an eventful life your children have had so far! And you! Thankyou for linking up with #tired&exhausted

  3. must have been very scary especially when you could have lost both of them.
    The pre med use to make my middle daughter hyperactive and she would be bouncing off the walls when they came for her, but they never listened.

  4. Woah, it must've been scary and tough knowing both your daughters have AVSD and need surgery. Having studied about congenital heart defects, i can understand its symptoms