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


Helen and Pat Lawlor
Karl 05/01/01 – 04/03/01
Edward’s Syndrome


Our beautiful Karl was born on January 5th, 2001, at 1.53 pm at the Rotunda Hospital, Dublin. He was born when I was 37 weeks pregnant and weighed 3lbs 14 oz. We got a shock at first and both thought he was just small for 37 weeks. But then the nurses noticed he had club feet. From then on our worst nightmare began. Karl was taken away to be examined by a paediatrician and after about 10 minutes he came to see us in the labour ward. Nothing could have prepared us for what we were about to hear. He told us he suspected that Karl had Edward’s Syndrome (Trisomy 18), although not all his features were typical. We had never heard of the syndrome and were in total shock. What should have been a happy occasion turned into a nightmare.
We asked the paediatrician about Edward’s Syndrome? He told us that Karl’s organs were incompatible with life and that he would not live very long. It was all too much to take in. We couldn’t even cry, our bodies were in total shock.

I was taken to a private room where we could be on our own. We couldn’t understand why this had happened and it was all unreal. Later that evening we visited Karl in the neo-natal unit. He was so small but so beautiful. I felt such an overwhelming love for him that I didn’t want to leave him. The next day the paediatrician visited us again, he said they had sent off blood tests and that we would have the results in a few days. Those tests would confirm that Karl had Edward’s Syndrome. On January 6th I left the hospital without Karl. He stayed in the Special Care Unit but it was so strange and sad leaving the hospital without my baby. On the Sunday morning we had arranged to have Karl christened in the hospital. We brought our other two boys, Darren and Craig, and my mother. It was a beautiful christening but it was tinged with sadness. We cried for this beautiful baby that we knew we couldn’t keep. Karl stayed in the Special Care Unit until 9th January. He was then moved to the Paediatric Unit where he had his own little room and we could spend more time with him.

Twice a day we visited Karl, once in the morning and then at night. It broke my heart to leave him there. On the Saturday we decided we would bring him home for the day. We collected him at 10am. The boys were so excited that their baby brother was coming home. I felt a bit nervous at first but after a while we just treated him like any other baby because he was our baby. We brought him back to the hospital at 6pm. It killed me to bring him back so we asked if we could bring him home permanently. They said there was no reason why we couldn’t.
On Monday, January 15th, Karl came home. He was tube fed every three hours. We soon got used to it. He slept between Pat and myself. Some nights he didn’t settle very well so Pat stayed up nursing him while we went to sleep.

As the weeks went on we increased his feeds and he began to gain weight. We were happy about this. He was thriving for one so small. So many people came to our house to see Karl. Everyone loved him. He was so special. Karl had 24-hour care. It was very tiring but we did it. He was our baby and we loved him so much. Karl started having apnoea attacks. He would have three attacks a week. This was very frightening but we got used to it. Once he was patted on the back he would start breathing again.
At about six weeks these attacks stopped. We were quite relieved. He was still gaining weight and was about 5 lb 7 oz. We began to think that maybe he would live for a few months .But during the last ten days of his life he seemed to be uncomfortable, crying a lot between feeds. He only seemed to be comfortable when he could sit up and then fall asleep. We felt so helpless. But we did everything we possibly could to make him as comfortable as possible.

On Saturday, March 4th, we took Karl and his brothers to the park for a walk. Little did we know that this was to be our last outing together as a family. We brought Karl to bed that night as usual. Pat fed him at 3am.
I woke up at 7am on Sunday, March 5th, to find that our beautiful Karl had slipped away during the night. We were granted all we had hoped for. That he wouldn’t suffer any pain and that we would both be with him when he died. His life was short and he changed our lives forever. We will always love and miss him. Our precious angel. He will look after us and his two brothers who will love and remember him always.

Helen Lawlor