About Your Unborn Baby
Your Unborn Baby was compiled by Rachel Attwell, Jenny Robbins, and Christine Rose, with the help of SOFT medical advisers and families affected by trisomy 13/18 who have shared their own personal experiences.
Every family is unique. What may be right for one child or family is not necessarily right for another, and parents can use the shared memories in these booklets as a basis for discussion between themselves and their medical advisers. SOFT does not recommend particular methods of treatment, and new treatment must never be started or existing treatment changed without consultation with your doctor and other medical professionals. SOFT does not represent any political or religious groups.
Rachel Attwell and her husband Dominic were young healthy parents of one child when during their next pregnancy they were given a prenatal diagnosis of trisomy 13 and little other information apart from, “This baby is incompatible with life”. The pregnancy was terminated at 22 weeks and Bethany was born in 1991.
I don’t think a day goes by that I don’t think of Bethany. I still long to holdher in my arms and tell her how much I love her; but that all encompassing pain has lessened over the years and the ache that remains is actually a comfort.
Six months later they were told about SOFT, and it was then they learned much more about trisomy 13. Rachel says that although their ultimate decision would probably have been the same, the SOFT information would have been invaluable at the time of diagnosis. Rachel joined the SOFT team as a befriender, and as well as talking to parents, organises workshops for SOFT Family Days.
Jenny Robbins and Christine Rose founded SOFT UK in 1990 two years after Jenny had a daughter Beth who had Trisomy 13, and Christine had a son Jonathan who had a partial form of Trisomy 18. Beth lived for three months, and at that time there was no information for parents about these conditions, a situation that Jenny and Christine decided to change. The first SOFT booklet YOUR BABY was published one year later.
Jenny, Christine, and Rachel have since had healthy children and continue to co-ordinate SOFT activities together with other SOFT trustees and are representatives around the country.
‘As always the need for communication is paramount among all the professionals involved. Any one of us may see only a few families of babies with Trisomy and may not have the latest information to hand. The SOFT literature can also be of help to us and to colleagues in primary or community care, and is available on request. Much of the information applies to other handicapping conditions too.’
Dr Una MacFadyen
Paediatric Consultant & Medical Adviser to SOFT UK
‘I needed to explain to every shift change of staff why I was there, and that was a terrible strain. A year later the ante-natal staff were asking, ‘What’s Edwards’ syndrome?’ and a very experienced midwife told me it was all for the best as we could have been parents in our eighties with a 40 year old handicapped person to care for. She did not accept my explanation that only a small proportion of babies even reach their first birthday.’
Experience of one mother after a prenatal diagnosis of trisomy 18.