Caring for Special Babies & Children/Adults
Support Organisation for Trisomy 13/18 - (Patau's/Edward's Syndrome)


Fiona & John Hennessy

Leah 25/9/05 – 5/11/05
Edward’s Syndrome


Leah was born on the 25th September, 2005 she weighted 4lbs 2 ozs by selective c section, as I had an emergency section with my other child Cian and I didn’t want to go through that again. I had no problem with the pregnancy I was just a bit tired, but my obstetrician scanned me every time I went to him but didn’t seem to think there was any problem. I still can’t understand why he didn’t see that her weight was quite small for 39 weeks. He told me I was having a fine baby.

When I went to the hospital on the Sunday night for the section the nurses checked the heartbeat and the machine was showing it was low. They performed a section straight away, unfortunately my husband John had gone home so I was quite nervous. Leah was born at 7.10 pm and the obstetrician told me there were a couple of problems – number one she had a cleft lip and one of her hands was slightly twisted. It was all such a shock, she was so small when we saw her and her breathing seemed quite laboured, the next day they told us that she also had a heart problem, they thought she had a syndrome called TAR. We looked it up on the Internet and that told us that she may live a normal life.

The doctors decided to send her to Our Lady’s Hospital in Crumlin for more tests. John went with her and I followed that weekend. They told us that they were going to perform a heart operation on her. When they were preparing her for the operation all I could think of was I will never see her again alive, but she came through it, she was such a little fighter. They led us to believe it was going to be a long road and she would have to have further heart operations.

Then two weeks later they informed us that a result had come back from England and that Leah had Edward’s Syndrome. I had never heard of this syndrome before, they told us it was incompatible with life, they were the hardest words I had ever heard.
Our little girl was going to die. It hit us like a ton of bricks we had such hope. I couldn’t cry as I felt this really wasn’t happening to us. They said she didn’t have the look of an Edward’s baby.

We decided to bring her back to the Bons Hospital in Cork the next day to be nearer to our families as her grand parents had not yet met her. We wanted to spend what time we had left with her. We didn’t know if it would be days, weeks or months. We went to visit her everyday and two weeks later I decided to bring her home. We feel now we should have brought her home sooner.

It took us a further 3 days to organise the medication etc to come with her. Leah came home on the Friday. It all seemed quite normal as this was what was meant to happen and Cian her brother was delighted to have her home. He had spider man waiting in her cot for her. There were so many people to greet her when she arrived. But little did we think that the next night she would die. I feel she held out to come home, to see the sea, to be with her family, to say her goodbyes.

Fiona Hennessy