Stories from the heart: Northumberland Mam

Throughout Heart Month, I’ll be sharing various stories from heart families about their experiences. Today’s post is from the lovely Kim who blogs over at Northumberland Mam. Kim and her two daughters were all born with a CHD which remained undetected until a hospital visit for an unrelated concern. Here’s the story of her heart family journey:

I was born with a hole in my heart but it wasn’t discovered until I broke my arm when I was 4 years old and had a stay in hospital. There was no surgery needed and it was left to close on its own… I had check-ups till I was about 14 and they told me only to come back if I had any problems. I haven’t so far!!

In February 2009 my youngest girl Ellie who was one and a bit at the time jammed her fingers in a door… While under anaesthetic getting her fingers fixed they realised she had a problem with her heart so we were referred to the Freeman Hospital in Newcastle…

We got to see the amazing Doctor Richard Kirk and after some tests we were told Ellie had an Atrioventricular septal defect (AVSD) he went through the symptoms and the only one she had was the excessive sweating… Becky my eldest girl who was 7 at the time had more of the symptoms and it worried us… She was checked over too and she had the exact same heart defect as Ellie. Identical. Doctor Kirk wanted to have me scanned too and the hole had indeed closed up in my heart but I had leaky valves which was nothing to worry about… He was amazed by us all.

Over the next few months we had many trips to the hospital where my girls had lots of tests and we were told open heart surgery was needed. Without it they would be lucky to see their late teenage years…Their hearts would just give up.

On Sunday the 16th of August we went into hospital…. I will never forget the day. I did nothing but break down and cry. It was my fella’s birthday too… Not the best day for him either. Becky was to have surgery Monday and Ellie would have hers on Wednesday… I didn’t sleep that night… The girls did thankfully and just after 7am the nurses came in and started getting Becky ready for surgery… She had her pre-med which turned her into a drunk like 7 year old… It was hilarious…

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Taking her to theatre was heartbreaking… I was trying to be positive and happy for Becky’s sake but I was a wreck! We were shown the bypass machine which would keep Becky alive while her heart was stopped… If it hadn’t been so stressful it would have been so interesting.

Becky was in surgery for five hours… It actually flew over. Ellie kept me busy… We got the phone call to say she was in intensive care… Nothing can prepare you for seeing your child full of tubes and wires, helpless and choking on a breathing tube… I was saved by one of the nurses when my legs gave way… She was ready with a chair… Apparently lots of parents just crumble seeing their child in that state for the first time… By 6pm her breathing tube was removed along with some of the wires and Becky was looking more like my girl. We left her to get some rest and we tried to get some sleep too…

The next morning at about 6.30 am we got a phone call… I thought there was something wrong with Becky but they were ringing to say don’t feed Ellie she will be having surgery a day early. Eek. The thought of it terrified me all over again but at least we wouldn’t have to waste another day.

Becky had been moved to the ward freeing up a space in intensive care for Ellie and she was taken to theatre… It wasn’t any easier second time round… If anything it was worse having both of my girls hospitalised. I did get to spend some time with Becky on the ward…We just watched TV, slept and I was able to tell her the worst was over…

On Tuesday evening Becky was eating again and Ellie was in intensive care… By the time we got up to see her she had no breathing tube and was trying to sit up… Less than 40 minutes after coming round from open heart surgery… They say the younger a child is the quicker they recover but Ellie was just amazing everyone…

When Ellie was moved onto the ward we had a chat with the surgeon and the doctor and they said the holes had been repaired but they both now had leaking valves which will need surgery but not for at least 20 or so years… Phew! They will be adults then… Surely it must be easier when they are older.

By Saturday we were back home with appointments to get the stitches out and for their post-op checks… It’s funny how things turn out. If Ellie hadn’t jammed her fingers in a door my girls would have been dead by the time they were 20 if not before…

We had yearly check-ups for a couple of years and now they are every 2 years… Last time we had a check-up nearly two years ago the lovely lady who scanned the girls pointed everything out and even showed us the exact spot where the holes were… It was amazing! Not everyone gets to see their children’s hearts on a screen.

Becky is 12 now and Ellie is 7… They are both fit and healthy mostly… Becky does get a blue tinge to her lips when she’s cold but really it doesn’t affect their day to day lives… They do everything every other child their age does… You would never guess that they have anything wrong with them but they have the scars to prove what they have been through and I am so proud of them.

 

Thank you for reading and thank you Louise for having me 🙂