“Eckersley House was like a haven, away from the hustle and bustle of the hospital and the beeping machines but close enough for us to go straight back if needed.”

On 22 November 2014, our baby girl Amelia made her dramatic entrance into our world. I had started to suffer with pre-eclampsia earlier that week and after spending a couple of days in Calderdale Royal Hospital I was rushed into theatre for an emergency caesarean section. The reason for the rush was Amelia’s heart rate.

When Amelia was born, she was struggling to breathe and despite trying her hardest, at just an hour old she went grey and became unresponsive. The doctors told us not to worry as she had been born so quickly and in distress, plus my placenta hadn’t been working properly.

Our Baby Received Life-Saving Heart Surgery

Charlotte and Amelia. Photo: The Sick Children’s Trust

Over the next couple of days we both expressed our concerns to both the doctors and midwives about Amelia’s panting and vomiting with her feeds. As her sugar levels rose we were told that because she was a so called ‘section baby’ born by caesarean she was likely to have a lot of mucus in her lungs, due to the lack of pressure which, through natural birth, would empty the fluid from her lungs. They said it was nothing to worry about.

She was due to arrive home two days later. The midwife did all the usual do’s and don’ts with me, we did Amelia’s first bath together, and then the doctors came to do Amelia’s checks. They mentioned a heart murmur, which they said was common in new born babies, and asked another doctor to check her over. Then things changed. The doctor said she couldn’t feel Amelia’s femoral pulses in her legs – more panic set in.

We were taken to the special care unit in Calderdale to have Amelia’s limb blood pressures completed. They started with her arms and as soon as they moved to her legs we knew there was an issue. Amelia’s heart was scanned and we were told we would have to be transferred to Leeds General Infirmary (LGI). Our “section baby” had quickly changed to a “heart baby”.

After five hours of getting lines into my tiny baby she was finally ready to go. I wasn’t allowed in the ambulance as I was still recovering from my caesarean and so I followed with a family member. My husband Nick travelled in the ambulance with our baby girl.

Our Baby Received Life-Saving Heart Surgery

Baby Amelia. Photo: The Sick Children’s Trust

When we arrived at the LGI it was two in the morning and Amelia was scanned immediately. We were then taken to a room in the hospital. The room was a good ten minute walk from the ward so Nick needed to push me in a wheelchair. The room was basic and cold. The issues with Amelia were awful enough but I did feel like I was in a nightmare as a few small comforts would have made such a difference at that moment.

On the ward the following day, Nick asked if there was any other accommodation. He was concerned for me after my surgery, especially with the distance, issues with the showers and the temperature in the room. We were then told by the nurse about Eckersley House, a ‘Home from Home’ run by The Sick Children’s Trust for parents with sick children in hospital, and that we’d been added to the waiting list.

Two days later, the ward got a call. One of the nurses came over and said “you are moving to Eckersley House today, go and pack your things”. Well, it was the first time I had felt any sense of relief. Nick went and packed our room up and moved our things across to Eckersley House. He came back and said I would love it.

Wow! A warm room, a lovely shower I could have before bed, black-out blinds, comfy bed, hairdryer, TV, a kitchen to use, friendly staff… The list goes on. It was amazing! I never really slept well when Amelia was in the LGI (or for months after that really) but that house made such a bad situation into a much more bearable one. The staff were always so friendly, and also had the experience to know when you may need to talk or be left alone.

At just nine days old, Amelia had life-saving heart surgery. She was due to have this when she was seven days old but unfortunately her operation was cancelled. We had been up early for theatre day and my Mum had come over to support us. After walking Amelia to theatre and watching her go to sleep, Nick, my Mum and I went back to Eckersley House to have a cup of tea so we were out of the hospital. Nick and I went for a couple of hours sleep whilst my Mum sat with Amelia. The blackout blinds meant that this could happen. My mum thought the house was amazing, and was so much more settled knowing that I was able to stay somewhere homely.

Another key thing that always sticks in my mind was having that place of haven – we were away from the hustle and bustle of the hospital and the beeping machines but close enough to be straight back if needed.

We were very lucky that Amelia came through her heart surgery and out of intensive care and high dependency so quickly. She shocked everyone! Once she was back on the ward I was able to stay with her, so we gave our room at Eckersley House back. We could have kept this on as she was still at the LGI, but I wanted someone else to have the opportunity to feel that relief and haven that I had in our short stay there.

The Sick Children’s Trust is such an amazing charity and I cannot thank them enough for all of their hard work to run such a great place for parents like us. Staying there has really made me want to give something back, so I’m going to keep returning to Eckersley House as much as possible to volunteer. They helped us so much in our time of need and I will be forever grateful.

-Charlotte & Nick Ford, Amelia’s Mum and Dad

The Sick Children’s Trust believes every family with a seriously ill child in hospital should be able to stay together, just minutes from their child’s bed during their treatment. It costs the charity £30 to support a family for one night at one of its ‘Homes from Home’ and is completely reliant on voluntary donations. To find out more, visit their website.

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