We kissed our daughter before she went into surgery not knowing whether she’d come back out. Our consultant, the top cardiologist in Leeds, was frank with us. Isabelle was very poorly, and the only chance of survival was inserting a stent into her heart. That chance measured up to 20%. The other 80% was that she’d die on the table.
Isabelle was roughly three months old at this point which didn’t even put her at full term as I went into spontaneous labour at 27 weeks pregnant. I thought I just had stomachache at first, but when I went to Barnsley Hospital the doctor told me I was in labour and 5cm dilated. Forty minutes later, I had given birth to Isabelle who weighed just over 1lb. It was all very surreal but there was no time to get our heads around what was happening as phone calls were being made to find a bed with a ventilator for our baby. We were sent to Bradford where we stayed for two weeks. Isabelle did better than we thought she would and came off the ventilator in that time and so we were transferred back to Barnsley. During the transfer though Isabelle’s heart rate started to climb, which would be worrying in any sense, however we were told at our 20 week scan that she had a heart condition which is a combination of four abnormalities known as tetralogy of fallot. When we arrived back at Barnsley, Isabelle was floppy and really unwell. We knew we wouldn’t be going home anytime soon.
“Everything about what The Sick Children’s Trust does is amazing and we can’t fault it. From the coffee mornings held at the house, volunteers bringing food in and having a space away from the hospital to think. Isabelle may have some more mountains to climb, but for now is doing really well.”
Isabelle contracted NEC, a disease which causes the bowel to die. She needed emergency surgery and was rushed to Leeds Children’s Hospital – without this surgery she wouldn’t have survived as the condition had caused the bowel to burst. The surgery fixed the issue and she was given a stoma which she responded well to and eventually was reversed. But this wasn’t the end. There was more to come.
At Bradford, although we had a place to sleep it was within the hospital, far from Isabelle, and was stressful. We could hear the machines and alarms going off all night so it was hard to sleep. When we arrived in Leeds, we were an hour away from our home in Sheffield and I couldn’t leave Isabelle when she was so poorly. Thankfully, the consultant put our names forward for a place to stay at Eckersley House which is run by The Sick Children’s Trust. I didn’t know what to think, all I could think about was Isabelle getting better.
We were met by the House Manager, Jane, when the room did become available and when we stepped inside the house, we couldn’t believe it. Eckersley House became our home for six months and I don’t know what we would’ve done without it.
“We were told a few times that Isabelle might not make it which made me really anxious and not want to leave her side. My partner Ben found the best way to deal with this was to go back to Eckersley House to watch TV or just sit in the quiet of our own room. This was a really important aspect of Eckersley House which helped bring a bit of normality to a situation that was totally out of the ordinary.”
Both Ben and I are nurses and he had to return to work in Sheffield, Eckersley House helped us both manage balancing this with having our baby in hospital. For Ben, it meant that he could drive straight to Eckersley after his shift and sleep for a few hours while knowing he would get a chance to see me and his daughter. While Ben was working, I would chat to other mums in Eckersley House who were in the same position and I felt reassured. You can’t help but think why has this happened to me and feel as if you’re the only one going through it but at Eckersley House you realise, you’re not alone and that there are people who understand.
What had led to the consultant telling us that Isabelle might die on the table was when they tried to take her off the ventilator, her heart went into spasm and therefore she wasn’t getting the oxygen she needed. She was really sick for that entire weekend but thankfully survived and beat the odds. Following her stent, her heart didn’t seem to cause her many more issues, but her bowel did as the blood pressure medication caused another perforation. As the bowel is really delicate, surgeons don’t like to operate more than three times, so this time they left her belly open which would allow the bowel content to leak out of the wound. What happened with Isabelle was that it formed a fistula – effectively a spout acting like a stoma – and we were assured that the wound would heal over time.
“What provided me so much comfort was that I knew Eckersley House would be there for us if we needed it.”
Isabelle never ceases to amaze us. She’s always overcome obstacles despite always being warned that she might not. Six months after giving birth to her, we were allowed to bring her home. We knew that wouldn’t be the end to our time in hospital as she would need a stoma for her bowel and then heart surgery at a year old. What provided me so much comfort was that I knew Eckersley House would be there for us if we needed it. Jane was so accommodating and reassured us that they would help in whatever way they could to enable us to be close to our daughter.
Everything about what The Sick Children’s Trust does is amazing and we can’t fault it. From the coffee mornings held at the house, volunteers bringing food in and having a space away from the hospital to think. Isabelle may have some more mountains to climb, but for now is doing really well.
Faye Brown, Isabelle’s mum
