Hole in the heart: Lola's story 

Scott and Lucy talk about how their daughter Lola was diagnosed with ASD (atrial septal defect), a hole in the heart located between the left and right heart chambers. They describe how they coped with the diagnosis and treatment, how they explained to Lola that she needed an operation and where they found support.

Find out more about congenital heart disease

Transcript of Hole in the heart: Lola's story

Lola was about 18 months old

and we went to the doctor because she had a common cold.

She had the usual checks from the GP and she had a murmur in her heart,

which is basically a noise.

And we were told by the GP that it was most likely to be innocent

but it could be several things but lots of people have them

and it was almost certain it wasn't going to be anything sinister

but we should be referred to a heart specialist, which is what happened.

And we met with our doctor and he diagnosed her pretty quickly

with having a hole in her heart.

It's called an ASD, which is in the top chamber

and it's a hole between the left and the right chamber.

And we were told that the likelihood would be

that she would need it corrected, it was almost certain.

So we knew that that was coming.

So that was our worst fear.

Our doctor explained that the best scenario

would be to have keyhole surgery and that it was quite a simple procedure.

So they took her in and put her under anaesthetic

and they looked at her heart

with a camera that went down her food pipe.

The conclusion was that the hole was too big for them to correct it in that way.

So we were then told that she would need to have open-heart surgery.

So you have a machine that's breathing for your child

so that's kind of the awful bit.

You want the end result. You pray for some sort of solution

so they can have a normal, happy life.

(Lucy) We prepared her by saying she was going to have an operation.

We didn't hide it from her, not that she really understood what that was.

We said, "You're going to get lots of presents and visitors and attention

and it's all going to be fine." I think that's as far as we went.

(Scott) It's an open ward, so there's children all around you

experiencing similar sort of emotions.

So it was easier for her to understand.

Until then she had been the only child she knew experiencing such a thing.

I found the most therapeutic thing was talking to other parents

because there was always somebody who had been through more

and they were so strong and positive that it was infectious.

Yes. They knew our surgeons and all sorts

and they were always praising accolades on them as well, so it is reassuring.

(Lucy) We were told it was going to take about four hours.

We were advised to leave the hospital, so we had a walk around

and came back

and she'd just left surgery and we were warned about all the tubes.

And so we were with her. It was really important for us too

that we could be there when she came round.

She was in intensive care for 24 hours

and then she was put into a ward for a week.

(Scott) Then you get them home and you try and be as normal as possible.

And from that point, you think about the reality that they're getting better.

She was on 12 different medications

and they had to be given precisely on the hour or every two hours.

And so we had a schedule to stick to and it was really important to do that.

They had said that there are risks after surgery

and one of the risks is a pericardial fusion.

And that's basically fluid building up around the heart.

It was one of many things we were warned about but there are other things.

(Scott) They're very much, "Be aware of this

but don't worry about it. It's just a possibility."

And on her third birthday Lola was very sick and that was one of the symptoms

that we were asked to look out for.

So we went back in and it wasn't fine at all and fluid had build up

and exactly what we'd been warned about had happened.

Within about six to eight hours it had been sorted.

She'd gone down under anaesthetic and they drained the fluid.

And then everything was fine.

Lola was amazing throughout it.

She wasn't afraid. She was completely fine.

She trusted us and she trusted them.

(Scott) She's very proud of her scar. It's a kind of badge.

The surgeons talked about how compact they were going to make it,

even thinking about when she would wear certain necklines when she's older.

They tried to keep it beneath that. It's very neat and tidy

and it's almost fading already a few years down the line, so yes.

That's it. Right now she's proud of it

but she could, when she's older, become conscious of it

and they did make an effort to keep it as low as possible.

(Scott) It's built her confidence and her character, the whole experience.

She's full of energy.

She's actually, I find that she's quite resilient to common bugs.

When her friends have them and her brother has them

she just seems to kind of have it very mildly.

(Scott) After Lola's initial scan,

it turned out that it's highly likely that it's hereditary.

At that point it was diagnosed that I'd had a very similar problem to Lola's.

Luckily it was detected because it could have been life-threatening.

I was an ideal candidate for non-invasive surgery,

which worked really well.

The fact that she did save my life is a truth.

If hers had not been detected, mine wouldn't have been detected

and I would have had serious complications as I'd have grown up,

so she can, hand on her heart, say she saved my life.

Reminds me of it every day!

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