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


Helen Doherty & John Shine
David 12/10/00 – 14/10/00
Edward’s Syndrome


Our story began on 11th October 2000. I was almost full term in an uneventful pregnancy, due in 11 days and counting every minute. We already had a little girl, Meabh, age 2 years and 2 months. I went in for a routine scan and expressed my concern about how small I was. I was scanned and told to come back the next day, Thursday, for a more detailed scan (Doppler study). After the scan, the obstetrician decided to keep me in and induce me. She said that it was either a small baby or possibly a chromosomal problem (the first mention of a possible problem).

To cut a long story short, on the second contraction, our baby became distressed and I was rushed to theatre for an emergency caesarean section. As the obstetrician made the incision, she said “Helen, I don’t have a good feeling”. That was when my heart sank and the nightmare began. David was born at 1.33 pm on Thursday 12 Oct weighing 3 lbs 90zs. The doctors told me they were 100% sure that he had Edwards Syndrome. I was by myself as my husband John was not in theatre during delivery.
He was also told the news and told that our baby’s condition was “incompatible with life”. Those 3 words just kept ringing in my ears. They said so much – no false hopes.

I was able to hold David almost immediately. I will always remember lying there with an oxygen mask on and tears running down and pooling in my ears. The next 2 1/2 days were like a complete dream – they were such traumatic and sad days. Even now, 6 years later, when I delve back into those dark days, the hurt and pain come right back. We spent as much time as we could with David over the next 2 ½ days.
The staff in the Rotunda were great, letting me do the tube feed and allowing us to change his nappies and hold him. Distraught grandparents came from Limerick to see him. Frantic phone calls from family at home and abroad trying to make sense of it all.

On Saturday morning, the paediatrician told us that David has developed a serious heart murmur and time was probably running out. We asked him about bringing our daughter to see David. I will always be grateful to him was suggesting that we bring her in straightaway. We cherish the afternoon we spent as a family with both Meabh and David. The staff kindly allowed us to bring David from ICU into a private room, where we had him in a little crib connected to a portable oxygen cylinder.

We were able to take him out and let Meabh hold him and got some treasured video clips and photos. It was a lovely few hours but so so sad, knowing that poor Meabh would soon no longer have her little brother. In fact it was to be her last time seeing him. It was so hard to play happy families while all the time our hearts were breaking.

David died that night at 11.45 – in our arms. We brought him back to my room overnight which was lovely and John stayed. The next few days were cruel, leaving the hospital with no baby, the funeral, meeting people. Just getting out of bed every morning was an effort but Meabh kept us going and we survived. 18 months later I gave birth to a little girl, Alice and we have had another girl, Sarah, since.

There will always be a huge absence in our lives. The girls regularly discuss their brother and those 2 1/2 days we had with David will always be treasured.

Helen Doherty