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31.05.1991 - 16.11.1991
In 1991 we were expecting our first baby. Sue at 23 and David 25, all was going well. At 36 weeks during a routine checkup, some concern was raised about the growth of the baby. We were told the baby was a 28 week size and Sue was admitted to hospital for bed rest and monitoring. Following a further four weeks it was decided to induce the babies birth. This was not successful and when reaching a point when the baby was distressed an emergency caesarian section was carried out.
Our little Helena was born on the 31st of May, 1991 weighing 3lbs 13oz and taken to special care baby unit - William Harvey Hospital, Ashford in Kent. During those first few days we knew something was wrong but unfortunately we were not being told anything by doctors, although nursing staff were providing Helena with great care.
Eventually, after test results were returned we were told that Helena had 'Edwards Syndrome'. (full T18) Of course, this was in the days before the Internet and we had so many questions to ask. The initial prognosis was devastating news for us. The SCBU gave us a telephone number for a new charity called SOFT UK, in the hope that they could provide some guidance.
We contacted Christine Rose and talked things through, she proved very helpful and was able to provide answers to all our questions. She understood our situation and our circumstances were very familiar to her. Shortly afterwards, we received an information booklet, this contained a list of other families affected by T18 and T13. At the time, this list contained only around twenty families.
We made contact and subsequently visited Ann Smith, whose daughter Hayley was nine with full T18. We found this visit to be a positive one. Ann was very willing to help and share information, we felt lucky to have met with her and Hayley and that they lived only forty minutes away.
We were also lucky to receive great support and care from family and friends with several emergency dashes to hospital when Helena was poorly or had pulled out her feeding tube. We also remember fondly the nursing staff at SCBU, Karen and Sue in particular, that allowed Helena to be re-admitted in to SCBU so that we could take a respite break in the September.
After a challenging five and a half months, Helena sadly passed away on 16th November 1991. The following February, another SOFT UK member, Sharon  made contact with us. Another friendship was formed as Sharon lived within walking distance. It was an amazing moment when Sue and Sharon met for a coffee to share news and found that they were both expecting again. Following all of the usual difficult tests and monitoring, happily, our daughter Katie was born, Christmas Eve 1992. This was followed by our son Stephen, born over Easter, 1995.
Katie and Stephen have grown up always being aware of their older sister. We are very proud that Stephen chose to do his skydive, un-prompted, for SOFT UK, in Helena's memory. Helena would have been twenty-five in May 2016, co-inciding with SOFT's 25th Anniversary.
We will always be grateful for the support and guidance we received at our 'hour of need' and will continue to support the charity in its current work with families affected.
Sue & David Brown

Created: 28/01/2019 18:48

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