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Trisomy 13 (Patau's Syndrome) is where there is an extra 13th Chromosone. It happens at the second of conception. MOST babies die of this genetic condition, either in utero, at birth or shortly after. However, there are some children that can and do live with this, but they do have learning difficulties and/or other specialist needs. It would depend on the diagnosis and the severity of the condition. There are also 'Mosaic' Patau's and 'Partial' Patau's Syndrome.

When I was pregnant, I had the usual sickness, only it was in the afternoon - cravings in the middle of the night; and all the 'negative' things that can go with being pregnant. I had it! Despite this, I loved being pregnant, knowing there was a new life growing inside me. R (Kyle's dad) had told me I would be pregnant when Kyle was conceived and I was happily pregnant and over the 'critical 12 week period', or so I thought. I went for the 12 week scan, no problems noticed. My daughter was 17 and I had always wanted me to have another baby so she could have a sister/brother. I took Folic Acid, ate well, exercised and did everything that I was meant to. I had never heard of Patau's Syndrome and to this day, wish I never had.

Kyle Nathan Perez-Young
Still-born on 18.04.00 T13 (Trisomy 13): Patau's Syndrome
28 Weeks Gestation

At 22 weeks gestation, I went for the usual scan. The Radiographer said "the baby has a hernia", I said "but they can operate on that?" - she said "yes". Then she said "the baby only has one functioning kidney". I felt sick and said "but a person can live with one kidney cant they?". She said "two is better than one, but a person can live with one". I was relieved and chatting away when she asked me to be quiet - I knew there was more wrong with the baby and I lay there quiet. Then she told me the baby had something wrong with the heart. She turned to me and said she would go and get the Midwife Counsellor to come and see me. I was shocked, numb. I sent a text message to R to let him know all the things that were found wrong. Later he said he couldn't believe so much could be so wrong. I had an amniocentesis that day and was told they were testing for Downs Syndrome (T21), Edwards Syndrome (T18) and Patau's Sydrome (T13). I asked what the latter two were and was told if he had either of them, he would die in utero, shortly after birth or be still-born. I was mortified and prayed so much for him to have Downs Syndrome. I could cope with that. I had to wait for 4 days for the amniocentesis results to come through. The phone rang at 4.30 pm on 7.03.00, it was the Midwife Counsellor with the results, she said "I am so sorry, the baby has T13 - Patau's Syndrome". Then she arranged to come round to see me straight away. I was gutted and can't explain every feeling and emotion that went through me in one go at that time. I died inside also. I put the telephone down and just cried. I just thought 'this only happens to other people, this can't be happening to me'.

She gave me leaflets on the 'conditions' and advice on whether or not to terminate the pregnancy. This is a subject that I feel is a very sensitive one, and no one has a right to judge another for terminating a pregnancy. All I will say, is if you find yourself in this position, I sympathise, I know for me, I would not have been able to live with myself if I went ahead with a termination. She also put me in touch with an organisation called SOFT. I rang them and people shared with me on the telephone about their experiences, both on when their baby was diagnosed and what they did (e.g. carried or aborted the baby).

When I was told of Kyles condition and was trying to make a decision of whether or not to terminate, I sought advice from a doctor whom I trusted. She was trying to convience me to terminate the pregnancy and told me if I went ahead with the it there would be a big court case after to decide whether the baby should be allowed to live or die. I did book in to terminate the pregnancy but then remembered what the doctor had said - "you have no choice". It was then I took back my choice and decided to go ahead with the pregnancy for religious reasons, and to let Kyle leave the earth plane when he was ready to - not by my decision. I knew the next few weeks/months were going to be very hard for me. The doctor also suggested if I decided to go ahead with the pregnancy it would be for attention after he baby had been born; so people would think I was a Martyr - how WRONG SHE WAS. I agreed with her because I was too depressed to say different. The Midwife Counsellor told me if they were to terminate the pregnancy, I would have to go to a London hospital to have the baby's heart injected with a drug - I asked her what that was for and she told me it was "to make sure the baby was dead". I told her "you are not going to kill my baby". She told me "that is what you would be doing if you go ahead with a termination". This remark confused me even more. Throughout the pregnancy, the Consultant asked if I had changed my mind. The last time I saw him, I told him to leave the room and that I would tell him when and if I changed my mind. I told them to write on my notes not to ask me anymore. I was referred to see a Psychiatrist (Pathologised for the decision I made - to carry on with the pregnancy) to discuss my decision (in other words for her to change my mind as it was not the 'norm' to continue with a pregnancy knowing the baby will die). It was the right decision for me and I have no regrets making that decision to this day.