Yahoo News 'Doctors told us to sit down - our baby's life was fading before our eyes'
A mum who said she watched her baby son's life 'fade in front of her eyes' has revealed how doctors told her to sit down as they were told told life-changing news on Christmas Day.
Enzo Brisen was born in December 2020, the Liverpool Echo reports. His mum Amy Woodfin, 24, said he was 'absolutely fine' at birth, describing him as 'perfect and normal'.
But at about six months old, she and Enzo's dad Lee Brisen 'started to notice something was wrong'. After watching him become more and more ill, on Christmas Day in 2022, the parents had their lives 'shattered' when they were told their two-year-old son had three holes in his heart, and likely wouldn't survive.
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Amy, from Wallasey, said she first started to notice some symptoms as her son started to grow. She said: "As he started to grow I noticed a few symptoms, which at the time we didn't know they were heart symptoms - he was sweating a lot and it smelt of vinegar - a sign of his heart defect.
"He struggled to go to toilet, he was really constipated because his heart prioritised other organs. We found out when he was born he would have been in heart failure."
She continued: "We were told everything was fine and thought nothing more of it. He was about six months old and I really started to notice something was wrong. He was sucking in to breathe, he wasn't breathing normally.
"I took him to GPs and A&E, I was told he had an allergic reaction to his jabs at 12 weeks. I mentioned he was sucking in to breathe, and they said it was to do with his allergic reaction.
"The health visitors said it was 'just the way he breathes,' everyone reassured me he was fine, but to me it didn't sit right. My friend's little girl, who is around the same age, didn't breathe like that."
"I put it down to me worrying because I was a new mum, Enzo is an only child. It looked weird but I thought it might be the way he is, he wasn't a little baby he was 8Ibs so we left it at that. He continued to breathe like that, he was really struggling to breathe and his chest puffed up."
The mum said she was back and forth to A&E with her son continuously being told everything was 'normal'. It was on Christmas Day in 2022, when Enzo was around two years old, that Amy and Lee, 34, were told their son had a rare heart condition.
Amy said: "We thought it was a cold, he was eating fine on his birthday just two days before. But then he was sleeping 16/18 hours a day and was so, so tired all the time, his breathing got worse; me and Lee hadn't noticed it but his chest had got larger because his heart started to swell.
"Christmas Day came and he had no energy to even drink, we had to use Calpol syringes to give him juice, we gave him a nap and decided if he is no better when he wakes up we will take him to A&E. We just thought he had a chest infection.
"When he came round from his nap about 5pm after Christmas dinner I looked at him and he looked like a ghost, there was no colour to his face at all, normally he would smile when he wakes up from a nap and he looked at me and I shouted Lee, and he looked at us and it looked like a look of pleading, it was like he was saying something wasn't right with him. I phoned 111 immediately and we took him to A&E at Arrowe Park [Hospital]."
The next few hours flipped the parent's world upside down. Amy continued: "We thought it was a nasty chest infection. They did tests and everything appeared normal, luckily for Enzo by chance a consultant covering in the hospital that day overheard the nurse telling us everything seemed normal, and he said he was going to do an X-ray on Enzo.
"We got the results back and it showed he had fluid on his lungs. Everything went downhill, we felt like our world was flipped upside down and shattered. We were told his heart was three times the size it should be.
"I was going ballistic at this point, I knew something was wrong with his chest. We were told his oxygen had started to dip and that they thought he had something wrong with his heart. They rang Alder Hey who asked for them to do a scan on him while they made space for him in the hospital.
"I can't describe it but it felt like someone was looking out for us that day, the specialist who could do the scan was supposed to have gone home, but by chance he had stayed to help out on another ward and he walked past the room we were in, our consultant ran out and grabbed him. He gave Enzo's heart a quick scan.
She continued: "Enzo was fast asleep on Lee's chest, they started to scan him and I remember the absolute horror on his face when he said he has a VSD. I had no clue what this meant. I was told to sit down and the nurse held my hand, and said he has a VSD, which is basically a hole in his heart. I just remember feeling like my heart had been ripped out my chest because he had been suffering since the moment he was born, and I had been fighting because I knew something was wrong."
Amy recalled how they were told to go straight to Alder Hey Children's Hospital, who were ready and waiting for the family to arrive. She said: "Christmas went out the window.
"It was around 12.15am on Boxing Day when we got settled into the room at Alder Hey, they had everyone waiting for us when we arrived, all the specialists. It felt overwhelming. They were prepared for everything we were about to throw at them.
"After more tests we were told it looks like he had two VSDs, we were in Alder Hey for five days - he also had Eunomia too which is why he became so ill. We fell asleep in the hospital room that night then about 6am on Boxing Day, we heard "mummy" and Enzo was sat there, we just started crying.
"He so innocently asked for cookies and we just burst into tears. It has now become our thing whenever we are in hospital he asks every time for cookies and we just think sure why not you can have cookies for breakfast. We must have spent so much money on cookies for him in the hospital.
"That morning we were told he needed open heart surgery, and would probably be staying here for months. But, he was stubborn and he seemed better and we got sent home."
Over the next few months Enzo's health declined rapidly, he lost weight, stopped eating, walking and talking, Amy recalled. It was around Easter when Enzo contracted a cold and ended up in a worrying condition.
His mum said: "I remember we were due to go in for a check-up and packing our bags because I knew as soon as they saw him he was going to be admitted to hospital. He had his check-up [when he had his cold] and they admitted us straight to hospital, which I knew.
"I was kind of relieved that he was going to get help. They admitted him to ICU.
"We were watching Enzo fade in front of us, because of how poorly he was. He wouldn't be here because he was too sick if he wasn't admitted when he was. Our worlds shattered.
"They put him into a coma in hopes to give his body chance to come back. I remember us going into see him for the first time when he was sedated and there wasn't much we could say to each other. We felt like we were drowning.
"Even when he was sedated he was still being naughty and stubborn, he was waking up with the sedation, he was singing and dancing to baby shark - he loves sharks they are his favourite he has so many shark teddies which we took to the hospital with us - even though he was supposed to be sedated. They had to use a stronger dosage to keep him sedated."
Eventually, after weeks of staying in hospital Enzo finally had a date for his operation. Amy said: "He had his operation in June 2023. I remember that day, we just sat there while he was in his operation like it was another day. I was trying to play sudoku, I started crying because I didn't know how to play.
"I got a phone call off an unknown number and they said it [his operation] was done. The world stopped spinning for a minute, I said 'Lee he is done, he is out.' They told us it went 'textbook.' I remember saying 'have you told me you have given my son a good heart,' he [the surgeon] said 'he has got an amazing heart.' I remember just thinking were done, it's all done. Watching him fade is done.
"We were in tears, we were laughing, crying, all these intense emotions. I remember hugging Lee for about ten minutes. The relief that he was out of it, we were done. This had been hell for us and he made it out better than anyone thought. We thought there would be complications but nothing.
"We had been told to say goodbyes before he went in for his surgery, we told him to kick backside and be a shark. We have always said to him be a shark because sharks don't get scared and fight everything, it's our thing, and I remember one of his shark teddies falling off the side when we had the phone call saying it was done, it was as if he was telling us he was OK.
"We went to see him and you could tell he was in pain, but he had colour in his face for the first time since he was a baby. He had pink cheeks, his face wasn't as puffy, he was breathing for himself, and we were sobbing again, laughing, crying, I remember just wanting to hold him.
"He was still sedated at this point and they told us to go home that night because we looked shattered, we ate and had the best sleep ever. As soon as we woke up we went to go and see him. We didn't move from his bed side."
When Amy and Lee spoke to the consultant after the surgery they were told three holes were found in his heart, as well as a cleft and two of his valves were damaged - all which hadn't been discovered until the tot was two years old. Amy said the consultant said 'for him to survive to two-and-a-half years old with all that and not to have any help is mind boggling'.
She said: "I just questioned how has it gone this far without being undetected. Someone should have put his symptoms together and seen it before, if an ECG scan was done they would have found it. Three days after his surgery they woke him up and we finally got to see our son. I gave him the biggest kiss in the world."
Months on, Amy says you wouldn't believe Enzo had been in heart failure. She said: "To think he bounced back from 12-months in heart failure, it is baffling. They didn't look like they could save him at one point and now he is running around like a lunatic all the time. You would never believe anything is wrong with him, he is so happy.
"The likelihood is he will need another operation at some point, but we know he can handle it. I'm starting to think he likes being in hospital to be honest. He is just such a lovely kid, when other kids are sad he says 'be a shark like me.'
"It took us going through hell and back but we are there. The last year was the worst thing in our lives. I was just waiting for someone to listen and they finally did."
