Darcie-May was born with hypoplastic left heart syndrome – a serious heart defect which meant she would be in hospital from the day she was born. For seven months, she was treated at Freeman Hospital, in Newcastle upon Tyne, undergoing numerous surgeries before she was allowed home in November last year. Currently, Darcie-May is back in hospital but her parents are hopefully she will be back at home soon.
Darcie-May’s Mum, Zara Ward, 20, says:
“When we found out that Darcie had a heart condition it completely shook our world. I felt so sick with guilt and worry that she may not survive. But I had more of an urge to protect my daughter.
“It was unbelievably stressful knowing that our baby was going to be born with a life-threatening illness and from day one she would have to fight for her life. And that we would be so far away from home in Newcastle, leaving all of our family and support back home in Middlesbrough. But when we were told that Scott House was going to be supporting us, it lifted a weight off our shoulders.”
The Sick Children’s Trust’s Scott House is located at Freeman Hospital, just a few minutes’ walk away from the Children’s Heart Unit where Darcie-May would be transferred to when she was born.
Dad Nathan Fox, 25, says:
“Having a child in hospital completely changes your life. And our daughter doesn't follow the usual path a child does with her condition.
“At our 20 week scan, Zara and I found out that our baby had a heart defect called hypoplastic left heart syndrome where the left ventricle of her heart didn’t develop properly and is much smaller.
“We were in complete shock. But as soon as we found out that our daughter had this condition, although it was terrifying, we felt supported straight away. We were told exactly what the condition meant, and what our daughter would have to endure during her first few days, weeks and months of life. And what’s more we were relieved to find out that when Darcie was born and transferred to Freeman Hospital, we would be given a set of keys to a place we could stay called Scott House, which was just a few minutes’ walk from her bedside. There would be a direct telephone line to the ward in our private en-suite bedroom and we would be welcome there until our daughter got better.
“We were told to prepare ourselves as it was going to be a hard journey. But you can never imagine how hard the reality is.”
At two days old Darcie had her first major heart procedure – surgery called the Norwood. And despite initially recovering well and being allowed home, she was soon readmitted back to Freeman Hospital.
“I was terrified. Darcie was so tiny, and I didn’t know how her body would cope undergoing such an extensive procedure. Something so big for her tiny body. But she showed us that she could fight and to our delight we were able to take her home for a few days. But we were distraught when just after spending five days at home as a family, her condition began to deteriorate and she was rushed back to Freeman Hospital. We were told she would have to go through that procedure again and have many more surgeries going forward.
“Our little girl had to go through two chest debridements to remove diseased tissue due to an infection in the wound, a procedure on her right lung and a stent fitted in her heart. It was so painful to see what she was going through and having to stand back to let the doctors do their job. But we were there to hold her little hand and give her lots of kisses and cuddles.”
“I wouldn't wish this experience on anyone – having a seriously ill child in hospital. Every minute of every day, all you can think about is your child and what they are having to go through in order to survive. By the time Darcie was seven months old all she had spent at home was five days. For seven months we were in Freeman Hospital anxiously waiting for good news. Fortunately, for all that time we had a 'Home from Home' at Scott House which is run by The Sick Children’s Trust.
“Being in Scott House meant we were never too far away from our daughter. We were literally on the doorstep of the hospital and could be at her side as much as possible. When we weren’t at the hospital and we’re over at Scott House making food or doing the laundry, we were comforted to know that if we were needed urgently, the ward could call us directly and we could be there straight away – rather than making a long, stressful trip from our home in Middlesbrough.
“As a parent all you want to do is be there to support your child. Scott House and The Sick Children's Trust makes that possible.”
“Having my baby in hospital has been the most stressful thing I’ve ever known and I couldn't ever think of anyone else going through this. Not knowing whether your child is going to survive is just torturous.
“After spending seven months in hospital, Darcie-May was well enough to be taken off her oxygen and allowed home. It was amazing. We noticed a huge change in her too. She was so much happier in herself. She was talking more and started to learn how to stand up – it was really good having her home.
“She has had a couple of hiccups though and has since been admitted to our local hospital with bronchitis and we are currently back at Scott House as Darcie-May is not putting on weight so needed to be taken back to Freeman Hospital.
“We’re so very thankful to be supported by The Sick Children's Trust at Scott House, which continues to be there for us when we need it the most. Because of Scott House we can share every hour of every day together and be a family. I am so grateful for every minute I get to spend with my daughter. At one point I didn’t know whether she’d live.
“It has been a big help and relief not to worry about being at my daughter’s hospital bedside when she needs me. Especially if something is wrong. Because of Scott House I am able to be with her whenever I want and it means I worry less.
“We can just focus on our child. Which is all we want to do - and all we can do."
“Scott House also helps us to look after ourselves. When you have a child in hospital, it's like being in a fish bowl. You don't know what life is like in the real world. But at our 'Home from Home' we are with other families in similar situations which is a huge comfort. It doesn’t just help to talk about our children, but we can also chat about what else is going on in the world. It really makes a difference.
“Having a baby in hospital has completely changed my view on life. I’ve come to realise that every single moment is precious. Whether it is just a case of having the family together around the dinner table or sitting on the sofa watching television. Because when your child is on a hospital ward that's not possible.
“Even though Darcie’s case is really complex, she is doing better than expected. We hope she continues to thrive. We feel very lucky that she hasn’t had any other complications as a result of her surgeries.
Zara and Nathan are hoping that Darcie-May will be back at home soon after her latest admission to Freeman Hospital.
“Darcie-May is doing really well, and we’re hoping to be out of hospital for a longer period of time and just attend clinic every fortnight.
“Next on the list for Darcie-May is to fit a peg feed into her stomach and remove her NG tube and then we will wait to hear when she needs to go in for her next open heart surgery. Because of her condition, Darcie-May won’t be undergoing the three stages of open heart surgery that a child with hypoplastic left heart syndrome would, instead she will be undergoing a different heart operation called the Kawashima.
“We’re not too daunted about it at the moment because the doctors have reassured us that this won’t happen until she’s at least ten kilos or when her heart starts to struggle. But we know when that day comes, Scott House will be there for us again. Keeping us by our daughter’s side.”