'Friendship was a lifeline amid awful diagnosis'

A "silence that spoke volumes". This is how three mums describe the moment they each found out their children had rare heart conditions while they were pregnant.

Louise Hubbard, Justine Ducker and Danielle Mann, from Norwich, connected after Louise shared the story of both her daughters being diagnosed with congenital heart disease.

The trio formed a support chat which became "a lifeline friendship" with their babies due weeks apart in 2019.

Five years later the best friends say they are like a family and refer to themselves as the "heart mummies" and their children as the "heart babies".

During a scan, at about 20 weeks pregnant, all the women remember being excited, eager to see their baby. But moments later their lives changed immeasurably as an anomaly was spotted.

Each was told there was a problem with their baby's heart and given urgent an referral to Great Ormond Street Hospital (GOSH).

For Louise, 33, it was the second time she had been given the "earth shattering" news that her child had congenital heart disease so she decided to share her story.

Her daughters Felicity, 13, and Florence, five, both have Tetralogy of Fallot, a condition that causes four specific changes to the heart.

She said: “With Felicity, social media wasn’t around and I felt very alone, like I was the only person going through it.

"Congenital heart disease wasn’t spoken about as much. After speaking to the local paper Justine and Danielle saw the article and reached out separately and we started messaging and got together as a group.

"We formed such a great friendship and support group, I class the girls as family, we speak every day," she added.

She recalls how doctors had previously reassured her the condition was unlikely to be present if she had another child.

"So with Florence, when I’d been reassured it wouldn’t happen again I felt my world had shattered.

"The diagnosis for both was that they wouldn't survive. Being pregnant and not knowing if they’re going to survive was earth-shattering," she said.

All three women said the diagnoses impacted their pregnancies.

Louise says: "During pregnancy you feel like you’re the only one going through it. I felt very sad, upset and found it hard to see other pregnant people.

"When you’re pregnant you’re meant to stay calm and stress free to keep your baby healthy... that wasn’t the case for us.

"Anxiety and stress worries were every moment of every day.

"But the girls understood how I felt and even in the middle of the night we'd all be up messaging each other to help get through the hard times," she adds.

Justine, 35, also remembers the room going completely silent during her scan and in that moment she immediately knew something was wrong.

Her son Rian, five, was diagnosed with a complex mix of conditions - a congenitally corrected transposition of the great arteries (CCTGA), a hole in his heart, pulmonary stenosis and a complete heart block.

Justine says the support the women offered each other has been "priceless".

"I wouldn’t wish this on anyone, it’s heartbreaking. We’re very lucky we have each other," she says.

"We went from three random girls who went from knowing nothing about each other to being really amazing friends.

"We’ve all been through so much and we’ve all got different journeys ahead but we are all right there for each other and have our amazing teams at GOSH to support us along the way.

"They are among my closest friends now. The friendship has been priceless, without them it would be a really lonely journey," she adds.

Danielle's daughter Ruby, five, was also diagnosed with Tetralogy of Fallot and had to have her first surgery when she was just 25 days old.

She said: "Not many people, obviously, put it out there that they are going through that, so it is nice to have a friendship group that can relate to what you’re going through at every stage.

"Having someone at the end of the phone, Louise been through it with Felicity to let us know what we’ve got coming. It was a lifeline for the two of us who’d never been to GOSH and didn’t know what it was about. She really helped us along the journey we went through," the 30-year-old adds.

The mums have also worked together to provide support to their children and help them understand their conditions.

Louise says: "We always refer to their heart conditions as they have special hearts... that’s why they have 'warrior scars'.

"Florence used to find her scar quite distressing but we can relate to Rian and Ruby and say you have all got special hearts and similar scars."

All the children face future surgeries and are regularly checked by clinicians at GOSH, including paediatric cardiologist Dr Florian Moenkemeyer, who has treated all three.

The mums have praised GOSH for its "invaluable support".

This year all the women and their children are taking part in the RBC Race for the Kids to raise funds for GOSH on October 12.

Louise says: “It’s going to be extra special seeing our children jogging along. To see Florence and Felicity running with Rian and Ruby. Seeing them running together is something, for me, I didn’t think would happen."

Danielle adds running the race this year is "more special".

"This will be the first time we will all be there together, making it such a meaningful occasion," she says.

"It’s a big milestone," Justine adds

The mums hope by highlighting how common it is for babies to have congenital heart disease, other parents in their position will not not feel alone.

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