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


Moira and Jim Martin
Christina 01/02/99 – 10/05/99
Patau’s Syndrome

Easter Sunday 1999: Baby Christina with her parents Moira and Jim Martin and sisters Laura 9 and Sarah 3 and brother Stephen 6

Three weeks premature, baby Christina Martin entered the world at 1.13pm on 1st February 1999 weighing 7lb 13oz. A beautiful chubby baby girl. Her eyes tightly closed and fists tightly clenched, I held and admired her. It was then I noticed the extra digit on both hands. The nurse picked her up and ran her finger around the inside of Christina’s mouth. At that point, neither my husband or I, knew why she did this! The nurse had discovered a cleft palate! Although we were not aware, this was the second abnormality. Christina was within those first few minutes taken away to be ‘checked out’. It all sounded routine. The nurse did not alarm us – and so we just continued to be the proud parents of a baby girl. We telephoned our parents and passed on our good news.

About 10 minutes later, the Paediatrician returned with our daughter. We were told that our baby had an extra digit on each hand, a cleft palate, under developed eyes, low set ears and a heart murmur. More tests would have to be carried out and Christina needed to go to the Special Baby Unit to be monitored. Having asked what under developed eyes meant , they said she was definitely blind in one eye and possibly in the other. This was the case – Christina was in fact blind. Some weeks later in Our Ladys Hospital for Sick Children, having undergone intense hearing tests, it was discovered Christina was also profoundly deaf. Jim and I were numb, in complete shock. Our happiness crumbled and our world was falling apart.

A little later, Jim went to see Christina – she was in an incubator with many wires and tubes. He became distressed and had to leave. It was later in the evening before I got to see and hold our daughter again. That afternoon was spent in tears….it was all a blur. That evening the paediatrician discussed Christina’s problems. It could be a chromosomal problem, but we needed to await blood test results.

The following evening at 7pm the paediatrician broke the devastating news. Christina had Patau’s syndrome or Trisomy 13, a syndrome we had never heard of and knew nothing about. She explained that babies with this condition did not live – it was a condition “incompatible with life”.

We then went to visit Christina in the baby unit. The nurses gave us a small room where we could hold our tiny baby, cuddle her, kiss her, cradle her and photograph her. In the privacy of this room we wept for our little girl – she was not going to be with us long.

The next day our children, Laura age 9, Stephen age 6 and Sarah age 3, along with other family members came to visit. Many photographs were taken. There was a great sense of urgency for everyone to get to know her.

I left hospital on 5th February without our daughter. Her christening was held on 6th February in the chapel of Holles St. Hospital. The service was beautiful filled with sadness and joy.

Christina stayed in hospital until February 18th. During this time we visited twice daily, learned to tube feed and change her tubes.
On February 18th we brought our daughter home. It was an amazing feeling. She was now ours. Baby Christina Martin gave us 14 special weeks during which time we nursed her 24 hours a day. Christina did suffer pain. She began having apnoea attacks and on 10th May 1999 died peacefully in my arms. I was not prepared for this – I was devastated.

A beautiful funeral for a beautiful little girl. All our hearts were broken. Her time of suffering and pain was over. Ours was just beginning. Our 14 precious weeks came to an end.

We are privileged to have beer her parents. We have three other wonderful children and one very special angel. Christina will remain in our hearts forever.

Moira Martin