Hi, my name is Tayla, I am 9 years old.
I had a bit of a tricky start. When I was in my mum's tummy, the doctors said I had a heart condition called Complete AVSD, this means I had a hole in the upper and lower part of my heart, and a bit of a funny valve. My mum and dad were very worried when they were told this.
I was born at full term, I almost came into the world in the back of mum and dad’s car!!! I spent four days in hospital while doctors and consultants monitored me then I was ready to go home. Some days I was very tired and didn't want to drink a lot of milk, even though mummy insisted. I liked to be sick all over her, I’ve never seen my mummy move so fast.
Everything was going well until I reached 6 months old, I had para-influenza pneumonia, the doctors said I wasn't going to make it. Well I was going to make it! With a lot of strength, determination and help from my friends at Leicester Royal Infirmary Hospital I recovered well.
My name is Luca Roberto and I was born two weeks early on the 19th February 2006.
Like every hot-blooded Italian worth his salt I burst into this world following a spicy bowl of spaghetti (enjoyed by my mother) and a high speed car chase involving the police to the hospital (enjoyed by my father).
To be honest, I was desperate to get out sooner but my mum says she really kept her legs very, very, very crossed. It must have worked because when I was born the lights in the delivery room had only just been turned on! The first thing I experienced was my mummy who cuddled me and was crying with joy as was my father (who had also enjoying too much of something the adults call ‘gas-and-air’). I think they couldn’t believe their luck because I was just so good-looking (if a little temperamental!).
This is the story of Rory’s journey so far through primary school – the challenges he has faced, his hard work and subsequent achievements which we have all celebrated along the way. Rory started at our local primary school in 2014 at just 4 years and 3 months old with the educational odds stacked against him as a summer born boy, with a learning disability.
We always wanted him to attend the same school as his sisters and pre-school friends and were aware of the research which concludes that children with Down’s syndrome make better progress in all aspects of their learning if they attend inclusive mainstream settings. Unfortunately It wasn’t all plain sailing as when we applied initially, the (then) Head teacher suggested there were ‘other schools more suited to meeting his needs’. Thankfully there were other schools more suited to meeting her needs, (namely training in inclusion!) and she moved on. The new Head teacher’s fully inclusive approach has fostered a strong partnership between home and school and this has been the key ingredient in Rory’s successful inclusion in all aspects of school life.
Well I suppose it wasn’t meant to be, I was kind of hoping for a Valentine’s Day baby. But as she wasn’t due for another 2 weeks I prepared a meal for my wife. Soup to start followed by salmon and a lemon tart with heart shaped strawberries dipped in chocolate for dessert, all washed down with a bottle of pink bubbly. Half way through dinner my wife started to have some contractions, my Valentines Baby may be here after all!
During the pregnancy we were told that our baby had Talipes of the right foot, at that point all I could think about was how it would affect my Childs growth and the possible ridiculing that my baby would receive whilst growing up and at school. The more I looked into it the more I was worried about the implications of what method we would use to put it right…….about a month after we were told about the Talipes I just turned my back on the whole thing as no-one could tell us how severe it would be till birth and we will deal with it then.
Olivia is the fourth child of mine, born in Bath Somerset in 2012. She is six years old and has two older sisters and one older brother.
We knew before Olivia was born that she had Down’s syndrome, Dandy walker tendency, AVSD and a hole in her heart. She was born by emergency c-section at Royal University Hospital in Bath after many appointments and scans in Bristol at St. Michael's Hospital.
At the time Olivia was born we lived in Frome and we didn't have many interactions with other families. We just focused on Olivia and her medical needs. As you can imagine, that took up a lot of our time. Her first year was mainly spent attending hospital appointments.
Consultants planned her heart surgery before the age of five, but at the age of eighteen months and after so many illnesses, this was brought forward.
Olivia is so strong and has taught us the true meaning of love, affection and acceptance. I just couldn't imagine our world being without Olivia, she fought through her surgery and with support from a local Somerset charity we began to be more involved with other families. Hearing their stories, we didn't feel as isolated.
We were 28 when we found out we were pregnant with our first child. Married for just 5 months, and living and working in Dubai, things were fantastic! We worried our way through the pregnancy and had more scans than anyone else we knew – including a 3D one in which we saw our perfect looking baby boy. After complications with premature labour, eventually we were allowed to fly home to have our baby. As Freddie was placed in my arms I said ‘Do you think he has Down’s syndrome?’ One midwife said no he was gorgeous, while her older, more experienced colleague went quiet. At that moment I heard my world crash down around my ears. Although it was around 6 days until we had the confirmation blood test, we knew that our gorgeous boy had Down’s syndrome.
The first 4 years of life with a child with Downs Syndrome … a tale of two halves, Isabella’s story so far!
Kim and I had Izzy in August 2010, a perfectly normal, if a tad chaotic, home birth in Woodford, Northants.
An hour later, Izzy started deteriorating and we sped off to Kettering General Hospital. 24 hours later, she had had a full blood transfusion, she was in serious heart failure, and they suspected she had Downs Syndrome. Our new life as parents started in intensive care, and probably lasted there for the next 6-9 months, it was all a massive blur... our recollection of it still is today.
How could we have had a child with DS, we were devastated…
Why was she in NICU in cardiac failure and being fed through her nose via an NG tube?
This was not how it was meant to be…
The heart surgery came and went, there were numerous complications with further surgery and we spent Xmas 2010 on a children’s ward with other pretty distraught parents. Being busted by matron on the children’s ward with a sneaky beer on Xmas day was my only vice and moment of happiness that day! I recall being told “You don’t know how strong you are until being strong is your only option left!” a simple phrase but it summed up our predicament. It was the hardest thing we had ever faced, and very nearly broke me.
I promised a tale of two halves… and all I see today is a beautiful, very bright and bullet proof little girl, I rarely see Izzy with DS as we often used to. Izzy continues to amaze us day by day and push the perceived barriers to what a child with DS can or be told they cannot achieve. We don’t know what she will achieve or become, but we no longer limit our expectations, the future is her's to enjoy… She loves swimming, playing, walking the dogs, pantomimes, Richard’s playground i.e. ‘Upsndowns’ fitness classes, reading, parties and the inevitable coffee and cake (thanks Mum!)
We are the very proud parents of Maddie aged five and Dylan 19 months. Dylan has Down’s syndrome, although we prefer to use the term “Up” syndrome as there has been no point since Dylan’s arrival that we have felt “down”. He continually brings us immense happiness on a daily basis and he never fails to amaze us with his development.
We chose to have Dylan. And if we were given that choice every minute of every day since he arrived, the decision would never have changed. Dylan has brought something into our lives which is very difficult to put into words. It is a look and a smile. It is a wave hello and his most recent achievement, his first sign for “Please”.
Our experience is different to most in that we were prepared for Dylan’s arrival as we had received his diagnosis 18 weeks into the pregnancy. We were extremely fortunate to then have a very encouraging cardiac scan at 19 weeks and so were able to base any decision making process on our family’s circumstances at that time rather than on any potential health issues at birth.
We were so excited to be having our first child together and Jacob arrived on 15th December 2010 - 2 and half weeks early! Jacob was the cutest little thing and we were proud parents of a 7lb baby boy who looked so squidgy the nickname stuck. A few hours after Jacob’s arrival the midwife told me that she was worried about his breathing and that she wanted him monitored. Jacob was taken to the special care baby unit in Northampton and stayed there for the next 10 days due to having Pneumonia.
Later that day we were advised that a doctor wanted to talk to us, and we feared the worst. We were taken to a small room (tissues on the table) and the doctor holding a model of a heart. The Doctor told us that he thought Jacob has Downs Syndrome and the rest of the words are muffled! My first question was ‘how long have we got him for?’ The way in which he was talking about the heart I thought he was going to die. Rob and I gripped hands and sobbed as we didn’t know what this meant, it was such a shock. We were not expecting this news nor knew anything about Downs Syndrome (DS).
Jacob’s diagnosis of his condition was confirmed when he was 3 days old. We went through an emotional rollercoaster of not knowing what to expect and finding support from other parents. We realised and understood quite quickly that Jacob was Jacob, our baby, our little Squidge, and that’s what we wanted, that’s why we wanted to be parents; to love, care and support our child through life’s journey, we perhaps just had to prepare ourselves a little earlier.
I decided not to read up on anything about DS, I just wanted to be a Mum to Jacob and would deal with anything that came along as it arose, not looking too far into the future meant I could deal with the here and now and Jacob not what ‘could’ be – that is my way. I mentally had to say goodbye to the child we thought we were having but Jacob is 10000 times more than we could have ever imagined and fulfils our hearts with so much love and laughter.
We compared Jacobs age and ability at 12 months and saddened us again, but it was another part of our journey , and asked ourselves ‘why we do that’. Jacob is Jacob and why did we want him to be like any other child, as he isn’t, he’s ours!
Thank you for visiting the UpsnDowns website and thank you for taking time to read Elsie’s story.
My wife Leanne and I found out at our 12-week scan that there was a problem with our baby, the nuchal translucency measurement which measures the fluid space at the back of the neck was 9mm rather than the expected 1-2mm.
We were taken to a small room and handed various leaflets about the possible reasons behind this, all of which related to chromosome issues. The documentation was very factual and the lady who was speaking to us gave us lots of information.
Our names are Richard, Nicole, Abigail and Oliver.
Abigail is Nicole’s first child and she is 3 and a half years old, she is a little live wire. Then we have Oliver. He is our first child together. He is a beautiful little boy who has Down’s syndrome.
Nicole’s pregnancy with Oliver’s was normal; we had all of the tests apart form the nuchal translucency screen as the hospital took forever to get us a scan and we missed out by a couple of days. All of the results came back normal and low risk.
As we are both relatively young parents, (Nicole, 22 and Richard, 26) we never anticipated having a child with Down’s syndrome. We both thought that it was a hereditary condition and happened in older parents. Also with all of the results we had, it never even crossed our minds.
When we found out that Oliver may have Down’s syndrome it was a major shock to us. We were told not half an hour after he was born, “We think Oliver may have Down’s syndrome!” And that was it. We were left with no information or support.
The moment you hear those words it’s as if your heart breaks instantly. That perfect moment of meeting your child ruined. We were lost and alone.