Long Sutton mother of heart transplant baby joins Lincolnshire Vanlife Club and Lincs Lowlife Car Club Christmas convoy from Sutton Bridge to Pilgrim Hospital, Boston bringing awareness to organ donation

A devoted mother whose baby was born with a heart defect hopes to bring comfort to parents whose children will spend the festive season in hospital.

Ashley Hardy, 38 from Long Sutton, spent Christmas 2017 in Newcastle’s Freeman Hospital following the birth of her son Benji, now aged seven, who was born with hypoplastic left heart syndrome and has since had a heart transplant- carried out at just eight months old.

She is joining this year’s Christmas convoy organised by Lincolnshire Vanlife Club and Lincs Lowlife Car Club from Sutton Bridge to take gifts to children in Pilgrim Hospital, Boston. She’s on a mission to bring awareness about organ donation and to talk to parents in a similar position.

Ashley said: “I found out that Benji had a really rare heart disease at a 22 weeks scan and I was referred to Great Ormond Street Hospital.

“The only reason he hadn't passed way inside me was that I was keeping him alive - he should have died.

“I was planning his funeral before he was even born - but when he took that first breath and cry it took my breath away.”

Even though the heart transplant saved Benji’s life it was bittersweet for Ashley, knowing that another poorly baby had died so that the organ could be donated.

Ashley, who also has two daughters, said: “Knowing your son is going to have a chance at life but another baby died is gut wrenching.”

Benji was born in August 2017 at Peterborough Hospital and from there they moved to the hospital in Newcastle for treatment.

She feels her experience could help other parents going through tough moments - and wants to find a way to reach out to offer support.

Ashley said: “We spent nearly a whole year in hospital. I came out of hospital two months before his first birthday.

“They (medical staff) asked me to consider a termination and I said no.

“It makes me feel grateful for every day I have with him - I love him so much - he is gorgeous and so strong now.”

Life has not been plain sailing for Ashley who co-parents Benji’s 24 hour care and the pressures took a strain on her family life and her relationship - resulting in a diagnosis of complex PTSD.

Benji goes to a specialist school near Peterborough - he is unable to talk, has Autism Spectrum Disorder and is on seizure medication.

Ashley is learning sign language and uses picture cards to communicate with him.

She said: “He has to have regular check-ups on his heart and we go to Newcastle for that.

“Everything is going great and the only concern is that a vein is bent so after Christmas he will go into surgery.

“He was rushed to Cambridge after a seizure but hasn’t had one for a year and is on a small amount of medication.”

The Covid pandemic was a particularly worrying time as Benji is not allowed live vaccines and Ashley worried about him getting a cold.

With frequent trips to Newcastle, Ashley has designed her car with a blue and green slogan ‘Team Benji’ that represents organ donation and transplantation.

She said: “His heart has a maximum life of 15 years and his transplant at eight months old was a very rare find.

“But now he is so happy and he jumps around.

“He has his own way of telling us that he is hungry and we use daily emotion cards.”

Ashley attended the festive convoy last year but also feels it is important to give presents to parents of very ill children too and is asking for gift donations.

She said: “People don’t always understand it from the parents’ point of view so I hope to prearrange to go onto the wards and speak to the parents.

“I have seen children pass away in the same hospital as Benji and to see that their hearts have failed is heart-wrenching.

“I held it all in and now I feel so strongly about helping other parents.”

Becoming a counsellor to help other parents through such unbearable times is on Ashely’s wish-list.

She added: “It is important to get awareness out there that babies can be born like this and I can reassure parents to trust their instincts and that the doctors know what they are doing.

“Even though Benji got a new heart, he will never be cured, it will never go away - but he is stronger now.

“I feel I was chosen to be a heart parent and even though I was told his life could be limited - I had this sense in me - he is telling me he is going to make it.”

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