Why three tiny knitted hearts are priceless in helping mother’s grief

When Lisa Coleman looks at the tiny knitted hearts she keeps on her dressing room table, she will always treasure the cherished memory of her baby son’s short life.

The 36-year-old and her husband Matt, 35, fell pregnant with twin boys in August 2023, and the couple from Dunmow, Essex, were in total shock - but decided to embrace their surprise as an adventure. However, nothing could have prepared them for what they learned next.

When they were referred to Great Ormond Street Hospital (GOSH) and given a cardiac screening after a 20-week routine scan, they discovered their son Lennie had “rewritten the textbook” when it came to his heart.

“It was the complete opposite of what it should be,” Lisa told The Independent. The moment she heard he had a rare and complicated diagnosis of a severe hole in his heart, she said her world came crashing down.

The couple were told that Lennie would never have a full heart if her pregnancy made it to full term, but he could have surgery to give him half a heart. Then, once he turned 18, he would be eligible for a heart transplant.

Doctors were concerned that if Lennie had any further complications or died during pregnancy, then his brother Ronnie could be at risk too.

“We were offered selective termination, but that posed a massive risk to Ronnie as well,” she said. “It just didn’t feel right to end Lennie’s life like that either.”

They decided to progress with the pregnancy, with fortnightly scans at University College London Hospital (UCLH), which works closely with GOSH at the foetal stage.

“The most amazing thing was, we both felt like Lennie was giving us signs to sort of know what the right thing to do was,” Lisa said.

Lisa went into labour suddenly at 32 weeks in February 2024, and was rushed to her local hospital.

Senior consultants filled the shoes of junior doctors, who were on strike, and one cardiac specialist remained in the room during her caesarean to administer the drugs needed to keep Lennie’s heart beating in those first crucial minutes.

Ronnie and Lennie’s birth was incredibly rare as they were twins born within their amniotic sac, which is something that only happens to one in 80,000 babies.

“It's obviously really special when it's one baby, but it was two babies in a sack,” she explained. “I never got to see what that looked like, which is a shame, but at least I can kind of imagine it.”

Before Lennie was taken to GOSH, Lisa, Matt and Ronnie got to spend one special moment with him in the same room.

“I think that we didn't quite appreciate that it was going to be the last time that we were together in a room with the boys - they never really got to be together outside of my body,” she added.

While Matt and Lennie were transferred to London, Lisa remained at her local hospital, where she cared for a prematurely born Ronnie.

But while Lisa breastfed Ronnie, she couldn’t shake the immense guilt she felt from not being able to provide for Lennie, and being away from her daughter Cora, two, who was staying with her sister.

The experience was especially difficult because Lisa had previously been expecting triplets in 2021, but she went into labour at 20 weeks and the couple's three children were stillborn.

“Lennie was doing OK for the first couple of days at GOSH, which I think again he kind of deliberately did,” she said.

“He was such a special, kind boy. I think he was trying to keep me as calm as possible so that my body would produce what it needed to produce for his brother.”

While Lennie showed initial signs of improvement, his health started to deteriorate. Doctors found that his heart was letting too much blood get to his lungs, and he was beginning to have episodes where his heart was close to stopping.

When Lisa finally went to GOSH to be with Matt and Lennie, they made the decision to go down the palliative care route.

“I didn’t want him to pass away in a hospital bed with no one around him, like when Matt was in the accommodation that GOSH had put up for him,” she said. “Or if we got to a stage where he could have the operation, I didn’t want him to die in a hospital theatre with people around him he doesn’t know.”

Speaking with the palliative care team was “devastating” for Lisa and Matt, but the hospital had thought of small things that would go on to mean everything to the couple.

One of the nurses came round with little knitted hearts in a bowl, and offered three to Lisa - one for Lennie, one for Ronnie, and one for Cora.

Lennie then “kissed” all three hearts, one of which he is buried with. The remaining two sit on Lisa’s dressing room table, where they will go into memory boxes for Cora and Ronnie when they are older.

“It's priceless,” she said. “It's something from their brother.”

Lennie died in his parents’ arms in the rainbow room of GOSH at just two weeks old. Doctors had said he would pass in two hours, but he stayed alive for a further 24 - an extra day that was precious to Lisa and Matt.

“People have said he really put up a fight, but I don't like to think of it like that,” she said. “I like to think that he just wanted to spend time with his mum and dad before he left.”

She praised her “little brave soldier” of a son, who she believed wanted to make sure his brother would be able to live in his legacy.

Lennie’s bravery at just two weeks old inspired Lisa to run the London Marathon to raise money for GOSH Charity. She said marathon training has helped her through the immense grief she has felt since he died.

“When things have been hard, it's been nice to just think about Lennie - it's my time with him,” she explained.

“I’ll think about him the whole way round. My marathon leggings actually have his name written all over them so even if I have a moment of weakness, I can just look down at my legs and I'll be like, ‘No, carry on.’”

Money raised by Team GOSH at the London Marathon will help GOSH Charity fund vital family support, research and medical equipment to give seriously ill children the best chance and childhood possible. Find out more here and Lisa’s fundraising page can be found here.