Fahey, Emma

I discovered I was pregnant with our second child in December 2003. Daniel, our eldest, was 2, and had been born with no problems at all. It was a shock to find out, at 19 weeks, that the baby’s heart was on the right hand side. There was no indication at this stage of any other abnormality, and a visit to Leeds Heart Centre showed the heart was working perfectly. Even so, we were devastated; little did we know of the scale of the heartache still to come.

We battled on, with scans every 4 weeks, when, like a bolt out of the blue, the stomach and bowels were seen to be in the chest cavity - a diaphragmatic hernia. This was at 35 weeks. Having had the scan early on a Friday morning at the beginning of July at our local hospital, we had to wait until Monday to go to see the consultant at Leeds General Infirmary. We had some idea of the implications of a diaphragmatic hernia, and over the weekend, emotions veered from complete despair, to hopefulness, and a sense of the whole thing being surreal, and so bad it could only happen to someone else.

At 9am on Monday in Leeds, we were told our baby had a 20% chance of survival. I remember it like it was yesterday, and I still can’t imagine a worse moment in my whole life. Anyone who has had this news will understand that the emotions can’t be described. The consultant was so sympathetic and compassionate and understood how we were feeling. He answered all our questions - why had it happened? Was it something I had done? We were plunged into a whole new world, an all-engulfing thing that would completely take over our lives from that moment.

We drove home in a stunned silence. Nothing mattered anymore – work and other things were just insignificant - friends and family rallied round, and my Mum ran our house with military precision.

Every minute of every day seemed like a lifetime. I could hear the clock ticking like I was heading towards impending doom and there was nothing I could do to stop it.

Days went by - I went out occasionally to playgroup with Daniel, to the hairdressers, to Tesco’s, all the while looking at other people thinking how it was strange the world could carry on so normally whilst ours had come to a standstill. Friends with toddlers Daniel’s age offered support, and some people just didn’t know what to say.

Five weeks went by in this limbo. I went to Leeds every Wednesday for a scan, and each time I saw the baby I felt like crying, as it was destined to a fate I just couldn’t help. We were on a rollercoaster of weighing up our 20% chance, being positive and then plunging back into despair.

Towards the end I had a feeling of inevitability. I had 3 litres of amniotic fluid drained due to polyhydramnios in mid-July and felt physically better. When my waters finally broke on Sunday evening at home, I think we were relieved the limbo we were in was finally going to be over, and we would know one way or the other what was to become of our little one.

I had our little girl early the following morning, and I saw her briefly before she was taken to NICU. She looked healthy, she was on time and 6lb 1oz- the same weight as her big brother. They looked just like each other.

Three hours later, we were in NICU sitting next to our daughter. She was anaesthetised, paralysed and on life support. We were told she was stable and funnily enough I felt pretty calm, although my husband Simon was shocked and tearful.

This was the beginning of the long haul. It was four days later that Emma finally had her operation. I honestly felt like I had won the Lottery - she had made it in my eyes. However, following her to the theatre (after one false start the day before) wasn’t nice. We sat next to her for 10 days before we had to go home to start coping with Daniel and the daily trips to Leeds to see Emma. With a few ups and downs, Emma eventually made it out of NICU and onto a surgical ward. She had a feeding tube and I was expressing every four hours like clockwork - it was a focus for some semblance of a routine.

Emma finally came home at the beginning of September, age 5 weeks. There was a spell in November when she went into hospital with bronchiolitis. We have struggled on with various issues as they’ve cropped up. It’s been a bit like feeling your way in the dark, with no-one locally really aware of the implications of looking after a diaphragmatic hernia baby - feeding, breathing, day to day activities, and how to work round routines with Daniel, oxygen levels, chest infections, when to go to the doctors without seeming to be a pest (assuming you have a doctor who knows about CDH – in my experience, not all of them do). It’s been a long hard slog, but we now have an 11-month-old little miracle who can eat, sleep, breathe quietly (most of the time), and do all of the things other babies do at playgroup. She thinks the world of her big brother, and he her. At her christening next month, there won’t be many dry eyes, as she’s special to everyone who knows her.

I have heard of three other cases in the North of England and have been in touch with 2 other parents; one 18-month-old boy and one 10-month-old boy. The third baby didn’t survive. I would love to hear from other parents who found themselves in our position, and I am so pleased to have found a point of contact - I would offer in return any support and help I can. Just to chat with other parents of Cherubs would be great.


Written by Emma’s mom, Donna Fahey (Great Britain)
2005