Saskia Elizabeth February 1992 trisomy 18 Incompatible with Life? NOOOO!
In 24 years Saskia has achieved more than many 'normal' people. There are no regrets, no if onlys, and a few raspberries blown to the medical establishhment who use outdated clinical texts and still insist on telling parents that their baby with trisomy 18 won’t live.
This is not true as babies can survive pregnancy and birth, and can live for months, years, even decades in a few cases. These children, like Saskia, are usually cared for at home, and thanks to trips to the States and facebook, Saskia has friends worldwide who join her in raspberry blowing, several of them with trisomy now in their 30s.
Saskia Elizabeth was born at 16.52 on Tuesday 18th February 1992 after an emergency caesarean at 36 weeks as Mum’s blood pressure was dangerously high and baby hadn’t moved for nearly 24 hours. There were gasps of relief as baby cried almost immediately. Saskia weighed in at an enormous 3lbs 9 and a half ounces!! Don’t forget the half, a huge achievement for babies who fail to thrive.
Within about only an hour the Consultant came in and told us he was 99% certain of his diagnosis and that she may only survive until the weekend. Our little bundle was whisked off to Special Care as her junior doctor suspected Edwards' Syndrome because of her low set ears and tightly clenched fists.
We waited until Friday for the results of the chromosome tests – the longest 3 days of our lives although deep down I knew there wasn’t even really a 1% chance . “Incompatible with Life” – words we would hear a lot in the coming days and weeks, words our little 3 pounder ignored.
So much was happening, brain scan, heart scan, blood tests, incubator, oxygen, beeping monitors, a pink bobble hat to keep her head warm.
Sunday was a busy day as Saskia got wrapped up in a space blanket, still with the bobble hat – our girl was obviously going to be a future fashion icon!
They wheeled the incubator to a waiting ambulance to go to Oxford – all that way to find out she had 3 holes in her heart and was even more incompatible with life. Those words were beginning to grate.
Back from Oxford the nurses had arranged a christening for her – a borrowed gown from the linen cupboard, plastic health authority cups instead of cut glass, and a bottle of something that had a few bubbles in it. Saskia had lots of God Aunties – they were all dressed in blue. And they were amazing in the way they cared.
Back from Oxford the nurses had arranged a christening for her – a borrowed gown from the linen cupboard, plastic health authority cups instead of cut glass, and a bottle of something that had a few bubbles in it. Saskia had lots of God Aunties – they were all dressed in blue. And were all amazing in the way they cared.
April 14th Today the medical profession introduced us to the words “mentally handicapped”. It was a huge shock, but 21 years later we are terribly well acquainted with “additional needs”, and there are an awful lot of them!!
June 20th Saskia smiled and no it was not wind! She smiled and Heidi cried. You are all familiar with that one! May 1994 and Miss Incompatible with Life started school. In 1999 aged seven years, a note home from school said, 'Saskia has discovered the male species'!
During a visit from a theatre group Saskia thought girls jumping in frilly frocks very boring, then when men in tights appeared, Saskia sat bolt upright, flashed her eyelashes and grinned like a Cheshire cat. 14 years later she has perfected her skills and was thrilled throughout the Olympic swimming, rowing and cycling, with special smiles for a certain young diver who made a Splash!! Groan! She’s partial to footie as well – her colour is Blue of course.
What didn’t Saskia do at school? She swam and flirted, painted and flirted, learnt communications skills if she wasn’t too busy flirting, physio, dancing, games, cooking, trips to Butlins – a flirts paradise! She even went on a residential sailing trip, climbed Snowdon with a very nice group of soldiers and scaled a climbing wall in her wheelchair, there was probably a man at the top! Her school days were happy days and the staff were so caring.
Out of school activities included braving the London Underground for the first time and taking Saskia to the paraolympics. Outside school Saskia squeezed in 2 escorted trips to Lourdes and joined in family activities, particularly enjoying the company of her 3 male cousins and her brother.
Outside school Saskia squeezed in 2 escorted trips to Lourdes and joined the family in most activities, particularly enjoying the company of her 3 male cousins and her brother.
Saskia is a central part of our family, some would say that Saskia runs the show! She has got away with blue murder, blown bubbles during films at the cinema (that is speech therapy), grabbed and pinched skin (that is occupational therapy), and attempted to throw herself out of the wheelchair, well that’s physiotherapy!!
Not sure what we can call blagging a free upgrade and keeping the fare paying Club Class passengers awake on the overnight Chicago London flight, I guess that is socialising – ASBO pending!! Saskia now attends college 4 days a week and is causing havoc with the male staff in St Albans. Again wonderful caring staff.
The last 21 years have been tiring but inspiring. The support offered by people has been gladly given, and grabbed with both hands. There has been laughter and tears, exhaustion and elation, frustration and celebration, a wealth of experiences and a big hole in the coffers.
Lastly, a huge thank you to everyone who has been there for us since Saskia was born.
PLEASE NOTE: The text and photographs on this website must not be reproduced or transmitted in any form without written the permission of the copyright holder Trisomy 18-13 Support UK. The information provided on this website is for general information purposes only, and whilst every attempt has been made to ensure the completeness, accuracy, reliability, and suitability of this information, neither Trisomy 18-13 Support UK nor the website hosts can accept liability for errors or any misinterpretation resulting from its use, and any reliance you place on such information is therefore strictly at your own risk. In no event will we be liable for any loss or damage whatsoever, including without limitation and indirect or consequential loss or damage, arising from the use of this website. May 2013 ©