SOFT Ireland – Registered Charity Number 10554
The SUPPORT ORGANISATION FOR TRISOMY (S.O.F.T.) was founded in Ireland in 1991 as a voluntary group dedicated to providing support for families of children born with the chromosomal disorders – Patau’s Syndrome or Trisomy l3 and Edwards’ Syndrome or Trisomy 18.
One in four of all pregnancies ends in miscarriage and a high proportion are thought to be caused by a chromosomal disorder. A high proportion of trisomy 13 and trisomy 18 pregnancies end in miscarriage within twelve weeks of conception. It is therefore quite rare for such a pregnancy to continue to full term. The incidence of trisomy 13 is about 1 in 5,000 of total births while that of trisomy 18 is about 1 in 2,500 of total births.
Support is provided during prenatal diagnosis, during the child’s life and after the child’s passing.
SOFT puts families in contact with one another, provides information, funds bereavement counselling, funds respite assistance, publishes the SOFT booklet Why Our Baby and a newsletter, organises conferences and arranges professional speakers, do fundraising through various events and links with S.O.F.T. organisations worldwide.
Babies have been born with Trisomy 13 and 18 since the beginning of time, but it was only in 1960 that Dr. Patau and Dr. Edwards identified the respective features of the syndromes. Both syndromes are the result of an extra 13th or 18th chromosome respectively being present in each cell in the body. Different variants of these syndroms also exist, but are less common.
The History of S.O.F.T Ireland
The following is the history of S.O.F,T, Ireland as recorded in some newsletter articles and in accounts by former chairpersons.
S.O.F.T. Ireland Winter Newsletter 2001
A TIME TO LOOK BACK
|The 10th Anniversary of S.O.F.T. Ireland Reflections by Marie O’Conghaile, founder member and first chairperson|
Geraldine Dodd and Marie O’Conghaile, Marie O’ Conghaile and Dessie Boylan
“Most people who have been in contact with S.O.F.T. have given back in some way and it is this energy that has made it a very special group”
THIS is a time for looking back: The 10th Anniversary of S.O.F.T.
September 1991 was the first get together of families who had the experience of having a baby with Patau’s syndrome or Edwards’ syndrome. A small group of nervous, hurting, apprehensive people gathered in the Prince of Wales Hotel, Athlone, quite unsure of the future – Anne Boyle, Margaret Doherty, Edward and Bernadette Doyle, Noel and Sheila McManamly, Marie and Ronan O`Conghaile and Siena Ravensberg. All were united in a common experience of having had a baby with a trisomy, and all had a common goal to set up a support group to help other families experiencing the birth of a baby with Patau’s or Edwards’ syndrome.
On October 17th 1986 my daughter Aine was born in Portiuncula Hospital, Ballinasloe. The sad news that Aine had Patau’s syndrome and was severely handicapped both mentally and physically, was given very sympathetically to myself and Ronan by Dr. K. Connolly, Consultant Pediatrician. The future seemed grim and sadly there seemed to be no future for Aine, as babies born with Patau’s syndrome rarely survived beyond the first year. Our hearts heavy, we brought Aine home to die.
One year later Aine was still with us and doing very well, so we decided to take a more positive attitude and to deal with a child with serious problems who was part of the family. Our oldest child Niamh was eight, Conor was six and Donal was born when Aine was eighteen months old. They were difficult years, especially for Aine, with many a crisis to be overcome, permanent exhaustion and some joyful moments. We felt so alone. Why had this happened to us? This was a baby we welcomed and could give so much to.
Why Aine? The only information we had was clinical medical literature, with distressing illustrations and a list of medical terminology that necessitated a medical dictionary to comprehend. The loneliness and the isolation were all encompassing.
Who could we turn to? Who could guide us?
In October 1988 we met Noel and Sheila McManamly in Portiuncula Hospital, Ballinasloe. Their daughter Dara was newly born with Patau’s syndrome. Although respecting the sorrow of Noel and Sheila, I was selfishly glad they had a baby with the same syndrome as Aine. I wasn’t the only person. For me this was the first human contact with a family in our own circumstances. Sadly, Dara lost the fight to live after three weeks.
Life went on. Would I ever meet anyone caring for a baby with Patau’s syndrome?
Later in 1988 I heard that Anne Boyle, my past pupil that I had known since she was 12 had given birth to Shane who had Patau’s syndrome. Anne cared for Shane for six months until he also parted this world. Anne and myself shared our concerns and worries. Some time later I met Margaret Doherty and of course Megan who had partial trisomy. Megan was very like Aine, in age and appearance and presented some similar problems in caring. At last I could talk to someone who understood.
These were the emotional beginnings of S.O.F.T. The more practical beginnings originated in 1988 when Laurette Kiernan, a social worker in Temple Street Hospital through a family member gave me the address of “In Touch,” an umbrella organisation of support groups in the UK founded by Anne Worthington, MBE.
AFTER about three years when Aine was four and a half I felt strong enough to contact “In Touch.” Imagine my surprise to discover that Jenny Robbins and Christine Rose had just founded a support group in 1990. Jenny is the mother of Beth with Patau’s syndrome who lived for three months. Christine is the mother of Jonathan with partial trisomy 18. I attended the first conference of S.O.F.T. UK in Birmingham June 1991. Noel McMamamly also attended the conference. I was delighted to meet Fiona and Duncan Kerr caring for John with Patau’s syndrome. John was aged three. I also met Phil and Sylvia Hanly caring for Alastair aged thirteen who also had Patau’s syndrome. There were other children like Aine in the world. I returned home happy.
The seeds of an idea were sown to extend the marvellous work of S.O.F.T. UK to Ireland: putting families in contact, supporting each other and giving information. I knew I would have the support of S.O.F.T. UK as Jenny had very generously pledged financial help, and the use of their newly published booklet, “Why My Baby”. Three months later after many phone calls and letters our group met in Athlone. S.O.F.T. had its growing pains. We resisted pressure from the “Foundation for the Prevention of Childhood Handicaps” (FPCH) to become part of their group. We felt S.O.F.T. was strong enough to go it alone. We had no money and we had no experience of running a group. We just had a belief that we had something to give to others. S.O.F.T. had as its ethos that if we could help one family not to have to endure the loneliness, isolation and lack of information that we experienced, then it was worthwhile.
I would like especially to remember the first officers of S.O.F.T: Bernadette Doyle our first Secretary; Sheila McManamly our first Treasurer; Anne Boyle, the first newsletter editor; Joy Nairn, S.O.F.T.’s first contact person for Patau’s Syndrome; Larry and Kathleen Fenlon, the first contact persons for Edwards’s Syndrome and Margaret Doherty S.O.F.T.’s first contact person for Northern Ireland. These people had no precedent, they could not ask, “How did you do things last year?”
SPEAKING on behalf of S.O.F.T I would like to acknowledge and thank these people for their belief in me and for their vision and hard work in setting up S.O.F.T.
I remember from the meetings of 1991- 1992 Jasper and Della McKinney who designed our first posters, Geraldine O’Reilly, Fred and Michelle Faulkner, Mary and Derry O’Brien, Rosemary McCumiskey, Dessie and Joan Boylan, nurses Evelyn Higgins and Catherine McHale who gave a professional touch.
There were many more that were in contact. I recall some milestones in the development of S.O.F.T. In November 1991 S.O.F.T. received a cheque of £100 from Dr J Houghton, geneticist at University College Galway. I do not believe any Lotto winner could have been more excited -we had a professional who believed in us and we had money. Dr Houghton spoke subsequently at S.O.F.T.’s first conference and I know he holds a very special place in the hearts of the founder members of S.O.F.T.
Next milestone I recall was a major funding drive by Miriam O’Connor from Boyle in 1992. This fundraising was a parachute jump, involving friends and family of S.O.F.T. members and indeed anyone we could persuade to be adventurous and courageous and jump out of an aeroplane to help us. Again we had many who believed in us and thanks to the determination and hard work of Miriam, who, fuelled by her love of Aine, raised in excess of £6,000 for S.O.F.T. This money enabled S.O.F.T. to move forward and develop and implement plans and projects to help families.
Our next milestone was a commitment from the Department of Health to fund a booklet as yet not started. The booklet was a major undertaking over a period of over two years. Groups held meetings all around the country deciding on content and format, culminating in the launch of “Why My Baby” in November 1996 by the Secretary of State at the Department of Health, Mr Brian O’Shea. The book was written by families and from the heart of our experiences.
OUR first Conference in Athlone May 1994 was a joyful and sad experience. It was sad that Aine had died three weeks previously aged seven and a half. It was joyful in that her birth had brought about a forum where people came together from all parts of Ireland to meet, share, laugh and weep. We remember our speakers on that day, Dr. Jim Houghton, Dr. D. Brown, Consultant Paediatrician at Atnagelvin Hospital, Derry, and Ms Nuala Harmey, Social Worker at Temple St Hospital, Dublin.
Thinking about the past 10 years of S.O.F.T., there have been so many people that have helped its development. Indeed I believe that most people that have been in contact with S.O.F.T. have given back in some way and it is this energy that has made S.O.F.T. a very special group. Looking back and reflecting on the people who began with S.O.F.T. in 1991-1992, some are still present in an official capacity:
Mary and Derry O’Brien, Margaret Doherty, Dermot Keenan and I know Mary is in the background, and of course Dessie Boylan supported by Joan.
It is fitting that Dessie leads S.O.F.T. into the second decade. He knows the difficulties of caring for Emma for seven years and the pain of bereavement. I know he will continue to implement the ethos and ideals of S.O.F.T: to provide information, to put families in contact and to support each other through our common experience of having a baby with Patau’s Syndrome or Edwards’ Syndrome.
Why Our Baby?
The SOFT booklet has been written by parents who had babies with a Trisomy 13/18 syndrome or related disorder and contains a significant amount of information on both syndromes.
It is available from SOFT as a printed booklet or can be downloaded from the SOFT website. Its contents include:
- Why Trisomy 13 or Trisomy 18?
- Information on chromosomes
- The heart function and defects
- Pre-natal diagnosis
- When your baby is born
- How long will my baby live?
- Special care baby unit
- Feeding and digestion
- A double sorrow
- When your baby dies
- Children and bereavement
- Having another baby
- When your baby lives
- Family stories