Sarah Elizabeth

In memory of Sarah Elizabeth Montgomery

5th July – 30th September 1989

It was January 1989 and I can remember feeling – knowing – that my pregnancy with Sarah was not right. Mother’s instinct I suppose. I mentioned to it to my G.P who dismissed it instantly. It was only when the final scan showed abnormalities and I developed life threatening pre-eclampsia, that my deep fears were shown to be correct.

Those of you reading this will have gone through your own fears and tragedies and we all have own horrendous experiences. However, the overbearing feeling I had after I gave birth to Sarah was one of loneliness…

At first I was told Sarah had ‘Potter’s Syndrome’ and after a few medical students (without my knowledge) poked and prodded at Sarah, I was told she had Patau’s Syndrome. I was still reeling from the life threatening pre-eclampsia symptoms and struggling to understand what the implications would be for Sarah. An aloof consultant visited once and stated that she was ‘incompatible with life’ and she was so rare no one knew anything about her condition. I was told that the medical profession would not intervene but they would not let Sarah suffer. I was left in a hospital room, on my own with Sarah, and the nurses told me that they dreaded coming to my room because they did not know how to advise me. Sarah could not feed very well but there was no advice, feeders…..nothing. Eventually, I took Sarah home and, again, the health visitor only came once because she found it too difficult.

How did this make me feel? Alone. Bewildered. I had a two year old little boy to look after, very little family support and a baby that I was struggling to feed and look after. When I took Sarah out in the pram, the mothers that I had met during the ante-natal classes avoided me and I had to make so much effort to make them feel better….

Unfortunately, my beautiful Sarah died, aged three months, at the end of September. I loved her so much and feel so blessed that I was able to take her home and spend time with her, despite a total lack of support or advice from the medical profession. It was shortly after Sarah died that someone told me about Jenny Robbins and Christine Rose who had started a charity called SOFT UK for babies born with Trisomy 13 and 18. I remember feeling so relieved that there were other people who were in a similar situation and that there was support out there. I wanted to become more involved with SOFT UK but I then had another baby and my husband died from stomach cancer two years later, so I did not have the time. I hope, when I retire from teaching, to become a volunteer for SOFT UK and make up for lost time.

However, I would like to use this opportunity to say thank you to Jenny and Christine. In 1989 I felt in a dark, lonely place and thanks to your dedication and determination, you have created a successful charity that can help babies and families in these difficult physical and emotional situations. You have improved knowledge and understanding in the medical profession and raised awareness nationally and worldwide. Now, however tragic and difficult the situation, there is a plethora of support and help to enable people to cope. Thank you both so much.

Finally, my family and I recently participated in a charity fun in memory of Sarah and for SOFT UK and raised £1425 with Gift Aid. A vast number of people asked me about the charity and so I hope this has raised awareness and helps with the funds in the future.

Stay strong…..

Elizabeth Montgomery