The dad of a "miracle" baby who battled a serious heart defect for 11 weeks before tragically dying says his tiny son's twin "knows there's a piece of him missing".
Theo and Leo Mathieson survived against the odds after being born nine weeks premature on January 24, having developed in the same amniotic sac - a phenomenon which occurs in just one in up to 60,000 pregnancies. Their mum Stephanie, 37, believed she was unable to have any more children due to being diagnosed with symptoms of early menopause.
The pair spent two weeks recovering in Royal Oldham Hospital, and three weeks in Arrowe Park. But while Theo began to steadily improve, Leo continued to struggle. A scan revealed he was suffering from Total Anomalous Pulmonary Venous Connection (TAPVC), a defect in the veins leading from the lungs to the heart.
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Dad Peter, 29, said: "One of the nurses had been pushing for a scan for days, and that's when we found out that he had this heart condition, and he had to be taken straight to Alder Hey for open heart surgery.
"We were really scared, because it was explained to us that his chances were very low, and not only that, the first four, five years of his life he wouldn't be able to live like a normal kid because of his operations. But then he pulled through, and a week later he was pretty much healed up and he was doing really well."
Despite their fears about their son's breathing, Peter and Stephanie were given the green light to take Leo home.
But within 24 hours of arriving at their Bebington home, the fragile youngster began being sick, and he was sent back to Arrowe Park for a further two weeks.
He was discharged for a second time on April 5 and was looked after at home, with Peter and Stephanie taking turns waking up every three hours during the night to check on and feed the twins. But on the morning of Tuesday, April 12, tragedy struck, as Leo was found unresponsive at around 8.30am.
Peter said: "Stephanie rang the ambulance and I started CPR while trying to keep myself together, which was really hard because as soon as I saw him, I knew he was gone. He started breathing a tiny bit. I started to get cramps in my hand, my arm. I couldn't think. My brain was like a machine. I just did whatever I could do to keep him safe."
Leo was taken by ambulance to Arrowe Park, where his condition worsened before he tragically died just after 1pm.
Peter, a dad of six, said: "He fought on for a few hours and gave us all a chance to say goodbye. It was hard but we needed it. We needed that chance with him, to hug and kiss him and let him know that he was loved before he passed away and went to heaven.
"It feels like Theo almost knows something's missing from him. When I hold him, it feels like he knows something's wrong, there's a piece of him missing. The other kids are all distraught, but with Theo being a twin, I think he can sense his brother's no longer with us in body. I know it sounds silly because he's only a baby. But it's affected him as much as everyone else. I think he can emotionally feel that he's gone.
"Steph and I have had our ups and downs, and it's hit us both really hard, but we're pushing through. We're making sure the other kids know we're still there for them, we're still trying to be strong. But you can only be strong for so long before you break down and cry."
He now hopes his son's story will encourage other parents to speak out when they have fears about their children's health, as both he and Stephanie believe Leo should have remained in hospital for longer before being allowed to return home.
He said: "If you have a sick child, sometimes you have to keep pushing and be persistent, because sometimes you just know. I knew in my heart Leo wasn't ready to come home. If our story can help one person, I'll be happy, because losing a child is the worst feeling you can go through in your life. If we can prevent one person, just one, from going through it, I'll be satisfied with that. I'll know Leo's life wasn't wasted. That's the legacy I want to leave for him."
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