Miracle baby Oliver Seagrave, who was born with half a heart and has defied doctors all his life, is today celebrating his first birthday.
Oliver battled for his life when he was born in September last year with only the left side of his heart. After undergoing the first of three life-saving operations to re-route the blood through his heart when he was just six days old, he has gone on to amaze doctors and his parents to reach his first birthday.
Now, his mum Jessica, 22, and dad Ashley, 23, have spoken of their pride for their bouncing baby boy who they called their little miracle and looked back on a rollercoaster year.
Ashley, who works at the Co-op, in Castle Park, in Horninglow, said: "It is still hard to believe everything he has been through but he doesn't let it affect him. On the outside he looks like a normal happy, constantly on the move baby crawling around calling the dog, 'cat.'
"He likes his food and he does not sit still, and he is a real charmer with the ladies. To look at him you would have no idea how poorly he was."
Jessica said she has prepared herself for the "weird and emotional day" after admitting she thought they might never see his first birthday.
She said: "I didn’t think it would be possible to celebrate this day, we were told quite early on he might not survive through his operations and it has been a rollercoaster of a first year.
"It feels like a long time ago now but when we were going through it the first few months went really slowly and it felt like we would never come out of the other side.
"One year ago we were taking each day as it comes and expecting the worst but he is doing fantastic. Since he has been out of hospital, we have been able to really enjoy our time with him and relax. We are so proud of him."
The couple, who are married, first discovered that Oliver only had half a heart during their 16-week scan at Burton’s Queen's Hospital where doctors could only see half a heart beating and suspected he might have a rare condition called hypoplastic right heart syndrome. This is where the right-hand side of the heart is severely malformed.
They were transferred to Birmingham Women's Hospital where they went on to have all their scans and where Jessica eventually gave birth.
Jessica, a healthcare assistant at Royal Derby Hospital, said: "It was hard not knowing whether he would survive. At 16 weeks they thought he might have one of the rarer heart syndromes. That was a long three-day wait."
At just 36 weeks, on September 8, Jessica's waters broke in the back of her dad's car and she went into labour. After just six hours at Birmingham Women's Hospital, Oliver was born weighing 5lbs 12oz - and defied the odds from the word go.
Jessica said: "Originally doctors thought he would be born not breathing and they would have to resuscitate him, so there was a full paediatric team in the room waiting for him. Luckily he was born breathing."
Oliver was whisked away to the neo-natal unit and was then transferred to Birmingham Children's Hospital later that evening.
At just six days old, Oliver underwent surgery to have two stents put into his heart so that blood could flow through more easily. He will have to undergo another surgery on his heart to ensure blood flow at five years old and will then have to have a full heart transplant during his young life.
Jessica said: "Oliver has defied all the odds. He was supposed to be in hospital for four to six weeks, and he came home after 13 days. He will always be slightly blue, and he will get a lot more tired than other children but on the whole he looks well.
"One of his lung valves has narrowed and his heart is compensating which is not good because his heart is the poorly thing so we cannot afford for him to have extra pressure on it, which means there will be more procedures in the pipeline but we count ourselves very lucky to have him here with us."
During what was the worst time of their lives, the Ronald McDonald House charity organised for Jessica and Ashley to have a suite to stay in at its charity house, which was a five-minute walk from the children's hospital.
Ashley said the house was a "godsend" and he and Jessica now hope to thank the charity by raising £5,000 to sponsor a room.
He said: "If we had to come back home, it is an hour and 10 minutes journey to the hospital if anything happened to him. We understand how hard it would be for other families who were living miles away, you want to be there for your child, not the other side of the country.
"There, we had 24-hour access to Oliver. The accommodation was nicer than some hotels I have stayed in, and it was a place to go back and relax and get a good night's sleep so we could be refreshed for him."
Ashley said all the families were well looked after in the accommodation, with free breakfasts twice a week - with a 'Waffle Wednesday' and 'Fun Food Friday' which involved teacakes and crumpets.
Each room has an en suite, and all families have access to shared kitchens, a games room and library. Parents are only asked to pay a £25 deposit, but it costs the charity £25 for each room per night. By sponsoring the room for £5,000, Jessica and Ashley will ensure that parents needing the room for the next three years will not have to pay a penny.
Ashley said: "So far we have raised £3,200. We had a raffle night recently that was a tremendous success and people have been so generous.
"We really want to sponsor the room but either way the money will be going to an amazing charity and will really do so much to help people. We want to say a massive thank you to everyone who has donated so far, even if we don’t hit the £5,000 mark it means such a lot."
Jessica and Ashley will be lavishing love and birthday celebrations on Oliver at a soft play party on Saturday, which will be followed by a barbecue for family and friends.