The thing is, at the beginning, all you can imagine is unhappiness and dissatisfaction, such sadness as all your dreams and imaginings for your child are shattered. I compare it to a beautiful stained glass window, created by your conscious and subconscious thoughts and visions of your child during your 9 months of pregnancy, all those things he or she will do, all those things he or she will be… and then someone comes along and takes a huge placard that says DOWN SYNDROME and smashes it into your magnificent stained glass window…. And all you see are the shattered pieces all over the floor with this huge ugly sign clearly and blatantly spelling out in capital letters, something you really really don’t want to see. But the reason you don’t want to see it, is that you are frightened by it, and the reason you are frightened by it, is that you don’t know anything about it. It is quite simply fear of the unknown – and hey – EVERYONE has that!!
Somos padres de una hermosa niña de 5 años, es la menor de dos niñas, su nombre es Mia, tuvimos un diagnóstico prenatal, lamentablemente la mayor parte de la información médica que recibimos en ese momento fue bastante negativa, sin embargo el equipo médico y diferentes profesionales fueron muy solidarios y muchos de ellos trabajan para asegurarse que ella estaba bien durante el embarazo, realmente queríamos a nuestra bebé sin importar su condición, pero estábamos muy asustados sobre como el futuro podría ser. Mantuvimos una actitud positiva e investigamos sobre la condición un poco más y descubrimos que hay muchas personas que viven una vida plena con la misma condición. Mia nació por parto natural y sin problemas, también fue amamantada.
Lennon was conceived out of love with the assistance of Oxford Fertility Centre to Hayley (32 at Lennon’s birth) and Paul (59), and was born in September 2015 at 38 weeks by emergency caesarean section. That was the last we saw of him that day. Lennon was born with Persistent Newborn Pulmonary Hypertension and Sepsis (which has nothing to do with him having Down syndrome) and had to be resuscitated at birth. Not a very good start. He had to be transferred to a Neo-natal Intensive Care Unit where he remained for about 9 weeks. Frankly he was not expected to survive and on more than one occasion we were told to expect the worse.
Alex is our much-loved second boy of three. Three boys are trouble whichever way you look at it, but they all bring us happiness in their different ways.
When I was pregnant with Alex I went for the routine triple test, given as routine and without any counseling, and because of a series of admin hurdles we only got the result when I was 16 weeks pregnant and baby was making his presence well and truly felt being very active. The result was 1 in 100 for Down Syndrome. We discussed the implications of an invasive test and decided that our baby was much wanted and we didn’t want to risk a miscarriage. We would be fine if our baby had Down Syndrome.
I am Sarah and I live with my husband David and our three girls Hannah (almost 7 years), Beth (4 1/2 years) and Jessie (3 weeks!). I can remember clearly that lovely time before our 12 week scan when only David and close family knew that we were expecting our second child. I felt tired and a bit nauseas but was absolutely thrilled with our little secret. We had a lovely holiday camping in France with Hannah then aged 20 months and I couldn’t help but daydream constantly about ‘this time next year ……’ It was going to be great, the new baby would be about 6 months the following summer and Hannah 3 years – what fun we were going to have and how blessed did I feel?!!
I’m Lu, I have two children through IVF, Nathan is now 9 and Billy 7, who happens to have Down’s syndrome.
Our first round of screening came back with a 1 in 100 chance of Down’s syndrome (DS), we thought those odds were good and we wouldn’t have terminated the pregnancy anyway as we had been through so much to get a sibling for Nathan. We also wouldn’t have had amniocentesis at that point due to the risk of miscarriage.
Hi everyone. This is the story of Charlotte’s journey, she is the joy in our lives. Second to the day she was born, my second happiest moment in life was the 27 July 2011, as that was the day we were told I was pregnant. Colin and I had been trying for a baby for 7 years, and on what we had decided was our last shot at IVF, we hit the jackpot.
Hello, I’d like to introduce myself, my name is Liz and I live in Sherborne, Dorset. I’m originally from South Yorkshire, but moved to beautiful Dorset 5 years ago due to husband Steve’s job in the Army.
All my dreams came true when we moved to Dorset and from a successful frozen embryo transfer I was finally pregnant after years of wanting a child! Out of 5 embryos she was the one that worked! At the age of 41 and in such shock, I was pregnant I said yes to all the screening tests and wasn’t really thinking straight. The midwife said, “oh your high risk anyway, you’re over 40, with an IVF pregnancy, so I would advise the testing!” We had a blood test screen which came back as an extremely high chance 1:2, that our baby had Down Syndrome.
What do you write when trying to tell the world about your life with a child who has Down Syndrome? So, I tried to remember what it was like when I opened the door to the midwife who came to break the news that I am ‘high risk’ of having a child with Down Syndrome. Those memories are hazy and painful. I do remember a very supportive, clear thinking husband and amazing midwife and consultant obstetrician. When people talk about medical professionals and their handling of expectant and new parents I cringe, because I myself am a doctor. However, my own experience was a supportive midwife who never ever once raised any question about my pregnancy. A consultant Obstetrician who sat us both down, explained the ‘stats of chance’ and when we said we would like to continue the pregnancy and because of the risk of miscarriage did not want further tests, was totally supportive. That was the start and end of any discussion! I wish all expectant parents would have the same experience. I wonder whether we were ‘spared’ as we are both doctors. This remains a mystery….
In some circles, the 12th of August is known as The Glorious Twelfth. I can’t argue with that – it was the day that Emily was born back in 1992. Emily – beautiful, intelligent, crazy, gutsy, adventurous Emily. Words can’t define her. To understand Emily you have to be in her presence, you have to dance with her, sing with her, laugh and cry with her. That might just give you a glimpse of her character; of who she is. For who she is, is far more important than any medical descriptions that try to label and define her as simply having Down’s syndrome. Every day with Emily is an opportunity to learn something about how to live and what it means to be human.