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


Allison and Kevin Donohue
Kate 08/04/99 – 09/04/99
Edward’s Syndrome


The 29th March 1999 is a day I will always remember, I was having a deep scan done by the scan specialist in the Rotunda. At a previous scan they had told us that the baby’s abdomen had stopped growing.

We had an appointment at 12. We were brought into a cubicle and from then on our lives were to change forever. The first thing the Doctor said was that our baby had hydrocephalus. This possibility had never been mentioned to us so we were shocked. She then proceeded to say that there was calcification of the bladder wall, she could not locate one kidney and the heart did not look right. She was talking about our baby but not directing any of this information to us. At this stage I had gone into shock, I was sobbing.

We spoke to our gynaecologist. He explained that a baby with one problem is serious enough but a baby with numerous problems – we had to look at the possibility of its compatibility with life. He could not be talking about my baby who had been growing inside me for the last 7 months.

We went home and Kevin explained to Robert and Megan who were 8 and 6 at the time that the baby in mum’s tummy may not live. They were heart broken. Our family and friends were of great support to us. At our next visit we decided that our baby would be induced at 38 weeks. It was of no benefit to either our baby or me to prolong it any further.

For the next week we just muddled through each day. I found it hard to go out, I was afraid of meeting people. I kept feeling my baby kick and I used to think that where there is life there is hope.

On the 8th April 1999 we went into the Rotunda at 8am. The induction began at 10am. I felt guilty because as long as our baby was inside me it would stay alive but as soon as it was born it could die. I wanted to hold on to it forever. The nursing staff were brilliant, always on hand if you needed to talk or just to comfort us when crying. At 7.l0pm our little girl Kate was born weighing just over 4lbs. She was flat born but they resuscitated her. She gave a strange high-pitched cry. I held her and both Kevin and myself looked at our little girl, so small and so helpless. She was brought to the neonatal unit. We were told that Kate had either Edward’s Syndrome or Patau’s Syndrome. Edward’s Syndrome was confirmed at a later stage. We were brought to the neonatal unit to see our little girl. She had a lot of wires attached to her. Her little fingers were crossed over on each hand. One of her legs was turned in and she was missing three toes on each foot. She had only one ear. Her breathing was laborious, but she was still our little girl and we loved her.

The next morning she was on nearly 80% oxygen and still having difficulty breathing. I phoned Kevin to come with the children. They arrived at 11am and they each held her. I was holding her, she gave a little sigh and she slipped away at just after 12 noon. The grief was unbearable, our little girl was gone. She had only lived for over 17 hours.

Kate was buried with my Dad in Sutton. Both our families were present and they saw our beautiful little girl. Looking back, we felt we were lucky that she lived for those 17hours. It meant we had time with her and her brother and sister got to see and hold her.

We have since had another little boy Sam on 29th June 2000.

Allison Donohue