A devastated mum has shared the final words she said to her 'happy' baby boy who was 'always smiling', before he tragically died.
Amy Lea, 29, was 32 weeks pregnant with her third child, Harris, when she found out he had a hole in his heart.
After Harris was born on September 21, 2020 Amy and her fiancé, Paul Gibson, 32, spent most of their time at Alder Hey Children's Hospital as he would have ACG and echo tests every two months.
READ MORE: Mum who lost nine-week-old baby given heartbreaking diagnosis
But in January 2021 Amy and Paul were given the devastating news baby Harris had right confluent pulmonary vein stenosis, a rare condition in which the veins that carry blood from the lungs back to the heart are narrowed.
This condition has no cure and the couple were told Harris would have a shortened life expectancy.
Amy, who is from Burscough and now lives in Norris Green, told The ECHO: "We were devastated. I asked the consultant how long Harris would have to live but he told me he couldn't give me an answer to that. I researched it when I got home.
"Harris went on to have two stents fitted to open up the heart and on February 5 he had open heart surgery to fit an pulmonary artery band. It was fitted to try and help him gain some weight because he was tiny and weighed about 6.5lbs."
During the surgery Harris' oxygen saturation level dropped and the surgeon had to loosen the band, meaning it wouldn't help him gain weight as planned.
Amy and Paul then started the "uphill battle" of trying to get Harris to gain some weight by giving him high calorie milk and foods.
In the meantime Harris would have cardiac catheter's fitted every month to help treat his conditions and an injection every month to cover him from RSV.
Amy said: "He had to have an RVS injection because he didn't have an immune system, because he didn't have a thymus. But our older son Rowan was in school and brought everything home with him.
"Harris always had chest infections or tonsillitis."
To celebrate Harris turning one, the family of four went to a log cabin in the Lake District for two days.
Amy told The ECHO : "It was fantastic and nice to get away after the year and getting away from everything. We were just a family and nobody knew what had happened.
"But when we got back Harris had a chest infection and was really ill. We took him to the doctors on October 6 and they told us he had tonsillitis and sent us home.
"He was so ill and could barely keep his eyes open, being sick and was in and out of consciousness."
On Friday, October 8 things took a turn for the worst while Amy was looking after her son.
She said: "He was on antibiotics which had to be taken on an empty stomach and he was just crying and screaming. I think I lasted 40 minutes before I put him down on the couch to make a bottle.
"I said to him 'I'm going to go and make you a bottle now kid. I'll be right back babes'. When I came back my baby had passed away on the couch.
"I rang Paul because he had just left to go to his mum's to pick up something. I was just screaming at him down the phone, he said I didn't make any sense.
"It was his mum who said 'go home now, something is wrong'."
Amy described how she immediately called 999 after getting off the phone with Paul and was shouting "just tell me how to do CPR please".
When Paul arrived home he took over CPR and Amy said she "crawled out of the room".
She said: "I had to just crawl out of the room, I needed to breath and felt like I was suffocating."
Paramedics took Harris straight to Alder Hey, where the team carried out CPR for over 40 minutes. Harris was pronounced dead the same day, just three weeks after his first birthday.
Amy said: "Harris was always happy and had a smile on his face everyday.
"We were devastated when he died, I was diagnosed with PTSD and depression after what I witnessed but looking back, in a way I'm happy it happened in a familiar environment for him and not in a hospital.
"When we found out he had right confluent pulmonary vein stenosis, palliative care were involved. We knew his life wasn't going to last forever, but we didn't expect it to happen so quickly.
"Alder Hey were amazing with our boy, they did everything and more. If I needed a break the nurses would say they would give him snuggles or sit with him."
Now, Paul and his brother, Grant and friend, Edward, are raising money for Alder Hey Children's Charity by cycling from John O Groats to Lands End.
Amy said: "We wanted to give something back to Alder Hey after everything they had done for us and to help other children and babies like Harris so we came up with this ride.
"Paul said he wanted to do it because Harris' illnesses left him always out of breath and tired, but he was still always smiling, so I will finish the 1000 miles with a smile on my face and I won't give up no matter what because he never did."
To donate to the fundraising page, click here.
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