MumsnetGuestPosts (MNHQ) Fri 06-May-16 14:03:24

Guest post: "We didn't know about my daughter's heart condition until it was too late"

Jayne Carter says that 12 years after suddenly losing her daughter, the pain is as sharp as ever

Jayne Carter

Mother

Posted on: Fri 06-May-16 14:03:24

(15 comments )

Lead photo

Jayne's daughter Emma starring in a production of Oliver shortly before her death

“Have a good evening. I love you. Don't be late.”

These were my last words to my 13-year-old daughter Emma as she left for a friend's party on 12 March 2004.

A few hours later, one of her friends called to say she'd collapsed. My immediate fear was that she'd taken some kind of substance, but I knew she was too sensible for that.

I tried not to panic as I drove to her friend's house on autopilot, but when I saw flashing lights and a policeman guarding the front door, I felt sick. Pushing my way past the policeman, I saw paramedics huddled over my daughter performing CPR, trying to restart her heart.

Emma never regained consciousness. After doctors had been working on her for nearly two hours at the hospital I was told that even if she did make it, Emma would have suffered irreversible and severe brain damage. It's a decision no parent should have to make – but I realised I had no choice but to let Emma slip away.

In my shocked state, I hadn't even understood why Emma, a healthy and energetic girl, had suffered a cardiac arrest out of the blue. But doctors later told me that she had a congenital heart condition – a faulty mitral valve. She was born with it but ironically she'd never had a day's illness. She'd even been playing hockey the day she died.

Telling my other children that their sister had died was unbearable. My eldest, Tanya, lay on the bed with her all night. I told her younger brothers that Emma had been called away to heaven. They were hysterical with grief.

I was told that even if she did make it, Emma would have suffered irreversible and severe brain damage. It's a decision no parent should have to make – but I realised I had no choice but to let Emma slip away.


Although the days leading up to the funeral are one blurry mess, the day itself is crystal clear. It gave me huge comfort to see just how much Emma was loved by the whole community. Police had to shut the roads off because there were more than 300 people walking behind the horse and carriage pulling Emma's coffin. The church had to leave the doors open because people were spilling out onto the street.

Even though she's been gone 12 years, the pain of losing her is as sharp as ever. Her two brothers still struggle with not having their big sister around. Tyla, her baby brother, was born two years after Emma died and he's always saying how unfair it is that he never got to meet his sister. But at home we're surrounded by her pictures, so it feels as though he’s getting to know her through them. It’s not like we have a shrine, but a few years ago as a Christmas present, my partner took the kids to get their portraits done and we had Emma’s picture superimposed – so we look like a complete family again. That picture takes pride of place on the wall.

With every year that passes, there's another huge milestone and another 'what if' to get through. Some of her friends have children now and I have to choke back tears when I wonder if she'd have kids by now.

Thankfully she had some fantastic friends who will always keep her memory alive. They religiously lay flowers at her grave on her birthday and the anniversary of her death. I'm still very close to her best friend Natalie, who has had a hard time coping with her death. Before she went to university she had Emma's initials tattooed on the back of her neck and I know she looks upon Emma as an angel who is always with her.

It's only in the last couple of years that I've felt ready to share her story and work with the British Heart Foundation to help raise awareness of the devastation of heart disease. Emma’s story shows that sometimes people have no idea there’s anything wrong until something catastrophic happens.

I am blessed to have my other children, but my family will never really feel complete without Emma here too.

The British Heart Foundation will fund £500 million of research over the next five years. For more information about the BHF’s strategy for beating cardiovascular disease, please visit their website.

By Jayne Carter

Twitter: @TheBHF

ImperialBlether Fri 06-May-16 14:10:01

What a sad story. I'm so sorry you lost your lovely daughter.

flowers

StrawberryLeaf Fri 06-May-16 16:46:03

I'm sorry for the loss of your daughter Emma. Well done on raising awareness flowers

twofalls Fri 06-May-16 18:07:15

Thank you for sharing your story. And so sorry for the loss of Emma.

Northernlurker Fri 06-May-16 18:54:17

I'm so sorry to read of your loss.

My dd2 is 15 now. She was diagnosed at 6 weeks as having a heart murmur which turned out to be caused by stenosis of her pulmonary valve. She's always been well and it hasn't required treatment yet though it's quite likely it may eventually . Reading Emma's story has reminded me again how fortunate we were to have it picked up at that early stage. It might have been years later, if ever, that anybody listened to her heart. It specifically wasn't visible at our 20 week scan in 2000. However in 2006 we were expecting her sister and we were offered a scan that could pick up valve problems. Dd3 has a normal valve. I was struck though how much scans and diagnostics had improved in that time. It just shows you what valuable work the BHF does in raising awareness and pushing research. Thank you

Sammythemummy Fri 06-May-16 19:51:30

I'm so sorry for the loss of your beautiful daughter, sat here in a flood of tears sad

stephc007 Fri 06-May-16 22:20:37

So sad, but so glad that you have found the strength to talk about it and to help fundraise, to help others. You are a kind and generous person xx

GlitterGlassEye Sat 07-May-16 09:52:50

I'm so sorry about your beautiful girl. My 20 month old dd was born with a ventricular septal defect, only picked up at her 6 week check. The look on the doctors face while listening to her chest was enough to make me burst into tears. Luckily she doesn't need surgery in the near future but that could change as she grows and hospital scans and check ups will always be part of our lives. I take my hat off to the wonderful cardiology dept my daughter attends. Also to the BHF and you, for sharing your story and raising awareness flowers.

ParadiseCity Sat 07-May-16 11:42:23

I'm so so sorry for your loss. Emma sounds amazing.

prettybird Sat 07-May-16 17:02:29

One of ds' cycling friends, aka talented cyclist who was U16 British and Scottish champion found out that he had a dangerous heart condition that has meant he has had to give up all exertion. He could so easily have dropped down dead before he found out, given the sort of high intensity training he was doing. Article about it here where eg talks about just being happy to be alive.

As a result, many of the young Scottish cyclists are going to get heart screening - so a positive has come out of it.

prettybird Sat 07-May-16 18:02:25

Don't know why the "aka" is there (and in bold) confused

expatinscotland Sat 07-May-16 18:09:36

I'm so sorry for your loss, Jayne. Thank you for sharing Emma with us.

I lost my eldest of three children, our daughter Aillidh, to leukaemia nearly 4 years ago. She was 9.

The loss is indescribable. A lifetime of loss, for all that our children never lived to see and do.

flowers

3littlebadgers Sat 07-May-16 20:00:52

So sorry about the loss of your lovely daughter. Thank you for sharing your story with us. I lost my dd2 last year. She was stillborn, I was overdue. Her loss has near enough broken me, I can only guess at losing a child who has been your everyday for so long.

thatwouldbeanecumenicalmatter Sun 08-May-16 12:04:09

Thank you Jayne for posting, I can't even begin to imagine how difficult it must have been to write, nevermind live it. thanks

BeatrixBurgund Tue 10-May-16 16:15:01

So sorry to hear about Emma. Thank you for sharing her with us. x

Malina22 Fri 13-May-16 07:23:56

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

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