The Power Of PSDS

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Our daughter Lara is twelve now. That happened in the blink of an eye. A couple of weeks ago she was in London on a school trip visiting the main tourist attractions with all her fabulous friends and teachers from her new school. Minnie and I were worried for them all because of the awful terrorist incidents recently. To that end before the trip there was a briefing for all the pupils addressing any concerns they might have. When asked if there were any questions Lara’s hand shot up. She looked genuinely concerned. “Will we be allowed ice cream?” she asked. Well that lightened the atmosphere a bit. “Don’t Worry, Be Happy” is one of the great lessons that life with Lara has taught us, but that in itself isn’t enough. There needs to be something more substantial behind it and that something is the Power of PSDS.

Minnie, Maia and I moved to the PSDS heartland from London in 2006. Lara was a year old, we were uncertain about how the pieces of our jigsaw were going to fit together and, if truth be told, we were still a little emotionally vulnerable about her diagnosis. Minnie is instinctively more social than I am and when she was offered the chance to attend a PSDS Saturday morning get together she advised me that it would be a good idea if I came! We never looked back. In joining PSDS we have become part of a community. We share our highs and lows, learn from others, give something back, value the power of togetherness and grow as people. In our vulnerability we found security and then strength. So the first ingredient in our PSDS power mix is a sense of belonging for all the family and that provides the foundation for everything else.

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We all know that good things tend not to happen by accident. There is a structure to what we do at PSDS that enables us to move forward. Speech and Language, Occupational Therapy, Education days, drama, in school support, social events and a myriad of other PSDS led initiatives have given Lara the platform to flourish in primary and secondary school and set herself up for what we hope is a bright and fulfilling future. Without the services provided by PSDS, and the excellence of our team of professional supporters, we wouldn’t have known where to start. It is so important to have a sense of where one is heading and PSDS provides the route plan for the journey. To have regular access to the expertise that PSDS provides is a catalyst for so much. It’s empowering.

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I’ve talked about the sense of belonging but that wouldn’t be possible without great people. We have our fabulous children and their siblings, our passionate and caring parents, our inspiring and committed team, our generous and engaged supporters but above all we have Vicky, Helen and Sarah the founders of PSDS and the heart and soul of the charity. I’ve been privileged as Chairman to watch “the three witches” in action and it is something to behold. They want the best for PSDS and are intelligent and able enough to realise their ambitions. Above all they love what they do and have brewed a heady potion which will power PSDS into the future.

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These ingredients mix together to give PSDS an extraordinary positive energy. We are a vibrant charity. There is laughter, fun and celebration in all that we do. Even our logo bursts with colour! Our Big Summer Sleepover, This is Me exhibition, Quiz nights, Fun Days and myriad of other events capture that spirit and project it on to the wider world. There is a magnetism to PSDS that makes our wonderful supporters want to engage with us. PSDS provides us with security, then hope, then ambition and then strength. I feel so lucky to have been Chairman for the last ten years and look forward to my new role as Patron. PSDS is a force for good…how powerful is that!

Zach’s new world of sound

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An introduction to Zach

Zach is now 2. He’s a happy, playful and adventurous little boy. Zach’s had a challenging start to life. At nine days old he had emergency bowel surgery at Southampton General Hospital and then went on to have two more emergency operations on his bowels. He also had heart surgery to repair a large hole in his heart when he was six months old.

When we began to suspect he was deaf

I can clearly remember talking to a nurse who was caring for him after one of his bowel operations when he was 6 weeks old. I commented on the fact that Zach wasn’t responding to sound, she agreed with me. Once we got him home he had a hearing test at our local hospital which confirmed he was profoundly deaf. Further tests confirmed he had a condition called Auditory Neuropathy Spectrum Disorder (ANSD) – a real tongue twister! Simply put, this means that sound doesn’t travel to the brain effectively. We were told that without hearing Zach will never be able to access speech. This floored us. We were devastated. He had been through so much already, it just seemed so unfair. Zach began wearing hearing aids which were at full volume, but even then reaction to sound was intermittent and as he got older this reduced.

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Hello wonderful Cochlear Implant Team at St George’s Hospital

When Zach was nine months old we asked for him to be referred to the Cochlear Implant Team at St George’s (we had heard about this team through his Hearing Impairment Teacher). This referral triggered a year of assessments carried out by the Cochlear Implant Team. These included hearing tests and speech and language assessments. The purpose of all of this was to see if Zach was a suitable candidate for Cochlear Implants. CT and MRI scans confirmed that he was suitable for the surgery.

Wednesday,10th August 2016 – Family Meeting

At the end of a busy year of tests and assessments we were called to a family meeting to receive the lead consultant’s and his team’s decision. This would be the moment we would find out if our precious baby boy could have Cochlear Implant surgery and with that the gift of hearing and speech. We walked into a meeting room full of medical professionals. We felt apprehensive yet ready to fight our son’s corner. We needn’t have worried as it was decided that this was right for Zach. There are no words to describe how Mike and I felt. Our little warrior will hear, he will speak, he will hear us say “I love you”.

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Don’t get me wrong, it wasn’t an easy decision to make. There was a brief moment when I rather foolishly nearly put a stop to everything. The reason – “There is a risk of facial paralysis”. The consultants words were like a smack in the face. There’s a chance our Zach won’t be able to smile if nerves are damaged during surgery. To be fair to the consultant he was doing his job by making us aware of the risks involved, but this is rare and has never happened at St George’s. A few glasses of wine later and I saw sense. Zach will have Cochlear Implants. Bring it on!

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Friday, 13th January 2017

Yep, that’s right, Friday 13th!! The date of Zach’s surgery. It was a ridiculously long day. We kissed our little warrior goodbye and handed him over for surgery…again. Seven and a half hours later we were reunited with an irritated, thirsty and hungry toddler. The surgery went well.

Monday, 6th February 2017- Switch On Day

Off to St George’s Hospital we go! This is it! Zach had recovered from his surgery and was doing great. He was ready. We sat in a soundproof room with the best audiologist in the world (we think he is amazing) and waited for Zach’s first reaction to sound. The poor child leapt off his dad’s lap and cried in a way I have never heard before. In truth he was distressed. He had gone from a silent world to this new thing called sound and he wasn’t too impressed. He didn’t like us very much and he certainly didn’t like the poor audiologist. This sounds awful, I know, and I struggle to watch the footage of that moment, but believe it or not this is excellent. We were warned that he may cry.

He is getting the full range of sounds and frequencies hence his dramatic reaction at switch on. The days that followed were hard and emotionally draining. He continued to cry when we put the speech processors on. We were told by the audiologist to be strong “We move forward now” were his exact words. Our normally gentle audiologist never sounded so stern! Although it was a difficult time, we were reassured by the audiologist that it would get better and this was the right thing for his development. As a family we had to fight the urge to give in and take them off. We all just wanted to scoop him up and make it better. We supported each other and persevered. We knew Zach needed this to “move forward”.

Life with his speech processors

Once you get over the fact that there are magnets in your childs head that the speech processors attach to, then these are straight forward to manage. Zach can be a pickle and has figured out that they come off when he rubs his head against things. That’s why he now wears a special headband and yes he does look like something out of the ‘80s, but it helps to keep everything safely in place.

Magical moment at Digbies

Mike and I realised that persevering in those early days after switch on were starting to pay off. We had this wonderful realisation at Digbies. As always, we would all sit in a circle on the floor and sing & sign together. Zach used to be oblivious to what was going on when this happened and would do his own thing despite my efforts to include him. At his first Digbies after switch on we sat in a circle to sing songs and Zach sat up and listened. He was listening! He smiled at all of us. He was listening (yes, I said it again). Everybody commented on the positive change in Zach. The lovely thing about our fellow Digbies mums, dads and therapists is that they’ve seen the before (profoundly deaf Zach) and that they are a part of this journey and will witness Zach as he embraces this new world of hearing.

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Today

Three months after switch on and he is doing well, reacting more to sound as he learns to listen and communicate. He is attempting to mimic us. For example, he will attempt to say (sound) ‘Ready, Steady, GO!’ and ‘Bye Bye’. There have been several visits to the audiologist at St George’s and each time there has been a volume increase. Zach is almost at full volume which will be reached in the next few weeks. He still has a lot of work to do, but he’s doing it and having fun! He is now starting to associate sounds with actions, people etc. WOW! What a journey, but this has been a massive blessing. Only 3 months in and we are already seeing good things in Zach. Members of the Cochlear Implant Team have said that Zach is making excellent progress beyond their expectations. This is a life-changing event, we are so grateful to the team at St George’s for everything they have done and for the continuing support they are giving to our little warrior. We are excited about where Zach is heading next on this journey. It’s definitely going to be an adventure for him.

Watch out world, here comes our little hero, armed with this speech processors!

My sister, Thea

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My name is Rowan. I’m nearly 14. I live with my parents, two cats and my sister Thea.

Thea is 2 years younger than me and we both love Taylor Swift, Little Mix and lots of other music (Thea is a BIG 1Direction fan but I’m not). We love going to Costa, bowling, having sleepovers in my room (or in the tent) and we also like going swimming. We love Pizza Express and a café called Rialto because it has bubblegum flavour ice-cream. But our favourite food is Thai – dim sum is our favourite but Thea likes rice and I don’t.

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We like going to Spain on holiday because we love showing off our skills in the pool, going to the beach and eating out with mum and dad.

I like more sports than Thea, but she is mad on gym, dance and drama. She’s got some moves! Sometimes it’s a full disco in our house with flashing lights and Thea is the DJ – and that is sometimes my Sunday morning alarm call.

We do argue and get on each other’s nerves. Thea can be really annoying when she plays the same song over and over again on her i-pad. All in all I like hanging out with Thea. She’s got a wicked sense of humour, a mad laugh and a really amazing memory.

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Thea finds maths quite hard, but she likes having a tutor on Saturdays because she gets chocolate as a reward.

Oh and by the way…Thea has Down syndrome. I don’t think it’s a really big deal and she doesn’t either.

Having Down syndrome doesn’t change Thea, it’s just part of who she is. I think she is pretty cool because she has to work hard at some things. She is my role model. Things that I find easy aren’t easy for Thea, but she doesn’t let that get in her way. Last year she couldn’t score a goal in netball but now she can and she’s always on my team when we take on mum and dad.

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What bothers me about Down syndrome is what other people think they know. Or when they use it to criticise someone or put them down or make them feel stupid. They have no idea what Down syndrome means. I’ve heard people say things like “You are such a Downie!” and it makes me feel upset. They don’t know anyone with Down syndrome or what it means to have Down syndrome – they just use it as an insult and think they are being cool. But they are not.

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If I could make them understand what Down syndrome is, I’d say “it’s only an extra chromosome and people with Down syndrome aren’t different to you or me.”

Having Thea as my sister sometimes makes me feel emotional when I hear people saying stupid things. But it also makes me understand and care about other people too. I’m proud to have Thea as my sister and my friends think she is amazing (even though she annoys them too sometimes!

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A week in the life of the Grover family

Let me do a spot of scene setting… We are a family of 4, well 5 if you count the cat! Richard (Daddy), Manda (me, Mummy), Jessica and Jack (15 month old twins, Jack has Downs Syndrome). I thought I would tell you about the week we have had. I knew it was going to be a bad one when our boiler packed up (leak and hot water not working) last Friday. Luckily we have a British Gas service plan so called them out – couldn’t fix it till Monday, so we moved in with my parents for a few nights! Then the double buggy broke, so you get the gist of where I am going with this!

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On the Saturday Jessica woke up full of cold, sore throat and feeling very sorry for herself. Poor little snot monster! I also didn’t feel too good, so Jessica and I had a duvet day. Immediately I started to worry about Jack. Ever since birth he has had issues with his breathing when he gets a cold and has been in and out of hospital with bouts of bronchiolitis (which I know isn’t a major health issue, but for us generally means a stay in hospital and juggling Jessica and who looks after her). I could see Jessica was really struggling with her cold and knew it would mean Jack would have a real problem if he caught it. He has been so, so well over this winter too – looking really bright and strong, I was dreading it. By Monday I felt worse (lost my voice and had a very sore throat, good for the diet though as didn’t fancy eating anything!) and Jessica was still full of the cold. I went off to work and left the twins at my Mums. She normally has them on a Monday night anyway so I knew I could try to get a good night’s sleep and start to feel better. My Mum let me know that Jack had woken up full of the dreaded cold. She knew what signs to look for if he struggled to breathe properly so I felt comfortable she would look after him well and I could try and get me better. She bought them back on the Tuesday and Jack was really starting to struggle, snotty, coughing and not looking his best. But he was still eating well – always a good sign! The heating was back on, but no hot water!

Jack had a physio appointment on Wednesday and I was desperate for him to feel a bit better so we could show off his crawling and standing up. At the previous appointment he was just commando crawling, pulling himself along, but now he was on all fours and quick with it! We had also been invited to go along to a Portage session. Jack is on the wait list for Portage, so I really wanted us to show our faces! I still felt rotten on Wednesday but we got it together and popped to the Portage session. It was brilliant! Lots of play time and we got to see Joe there too. We met Joe and his family at a PSDS meeting so it was lovely to see them again. Jack wasn’t really enthusiastic about the session, Jessica had lots of fun though! She was definitely feeling better!

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We just managed to get home in time for the physio! Jack showed her his new moves and she was suitably impressed with him – I was full of pride. She booked in for another appointment in 4 weeks and said she wouldn’t be surprised if Jack is walking by then! I can’t tell you how proud I am of him and how well he is doing. Jessica has been walking for a while now, I can’t help but compare the two of them even though we all know every child develops at different rates. To imagine Jack walking too fills me with mixed emotions – dread that wherever I go I will have two of them running off, no doubt in different directions. And huge pride that he will be up and running. Gas man came again and still couldn’t figure out the issue with the water! He would send a plumber on Thursday as he thought it might be a water pressure issue. Grrrrrrr!

Thursday came and we were still without hot water! Jack took a turn for the worse and his breathing became very quick and he was clearly struggling with it. I rang the Child Assessment Unit (CAU) at East Surrey. Jack has a passport to the unit, which means that we are able to go there at any time without referral from a doctor. They said to bring him in to be assessed. My mum rushed up to look after Jessica for the day and to be there to let the plumber in! Off Jack and I went to hospital. I took supplies as knew we were likely to be there for a good few hours, if not the night. His sats were good, slight temperature, but breathing at a rate of 60 breaths a minute (should be around 30-40). The doctor then assessed him and could hear a wheeze on his chest – which I had suspected. They gave him 10 puffs on an inhaler and said we needed to wait an hour to see how he reacted to it. Well, it didn’t do too much for him so they decided to give him a nebuliser. He managed a bit of lunch after that and seemed to perk up a bit and his breathing eased. They suctioned out his nose and it really bled when they did it, but did manage to get a lot of snot out, which would help his breathing too. After 8 hours there they were happy for us to go home. I was relieved we didn’t have to stay in the night. We went home with the inhaler and instructions to give it to him every 4 hours and then start to wean him off it by reducing the amount of puffs he had. It had started to really snow, so took us ages to get home and what do I get back to? Still no hot water!

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On Friday Jack went downhill again. He was very lethargic and vacant. We waited to give him some lunch, which he refused (very unlike him) and I decided that he should go back to hospital again, rang CAU and they agreed he should be seen again. This time Richard took him and I stayed at home with Jessica. His breathing rate was back up in the 60’s again… They monitored him and after having his inhaler and after a few hours were happy he came home again. His breathing rate had gone down to 35 per minute, excellent work Jack! Gas man came whilst Jack and Richard were at the hospital and said he needed to get a new circuit board for the boiler – still no hot water!

By Saturday Jack seemed so much better – still wasn’t eating much but had a bit and perked up as he wanted to play and crawl around. Thank goodness! Gas man came early and got the water hot again! Today was a good day! What a week we had! But finally things were on the up for the Grovers! Huge credit to the team at CAU in East Surrey, what an amazing team they are. Always happy to see Jack and give him lots of cuddles as well as getting him better. Good report from the physio and we managed to get a taste of what is to come with Portage. Ticks all round in the end!

Next week is a quieter week and hopefully nothing else breaks down on us!
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Our Aubrey – Ready to take on the world

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I’m Ashleigh. I live in Carshalton with my husband Mark, our two sausage dogs and nearly two years ago, our daughter Aubrey was born…
We weren’t told Aubrey had Down Syndrome before having her, which is funny considering I had several more scans than usual. Aubrey apparently, was never quite in the right spot. There always seemed to be two sonographers in the room, however despite this, nothing was ever picked up.  In fact we were given a 1 in 10,000 chance of having a baby with Down Syndrome, which was maybe not the lowest odds but after speaking with my sister, she told me they were better odds than hers when she was expecting my niece and she was fine. So I had nothing to worry about right?
Aubrey came two weeks earlier than expected. After a scary awakening in the night, rushing to hospital to find I had preeclampsia and placental abruption (Fantastic!), they decided to break my waters and bring on the birth of our baby.  Needless to say Aubrey in her usual style, decided to do things her own way, and I ended up having an emergency C-Section. Throughout my pregnancy I was told I was having a big baby. We did not know the sex so I went into hospital believing I was going to be leaving with a large baby boy … instead we had a 4lb 12 oz. tiny baby girl. She was literally the smallest baby I had ever seen. I had packed 1 new born baby grow and the rest where 0-3 months but she was lost in them.  I remember feeling sick (my blood pressure kept dropping at the time), worrying about what she was going to wear and staring at the beautiful little face in front of me. ‘At last we meet my darling’.
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Unfortunately our joy and wonder was pretty short lived, when a Senior Doctor arrived in our room. He looked at Aubrey, checked her over turned to us and said:
“We are going to be testing your daughter for Down Syndrome”
HOLD ON WHAT?
I remember feeling devastated, crying so hard and looking over at Mark. Seeing his face was the worst. He honestly looked as sad as I felt.  This sucks, I thought. I didn’t know anything about Down Syndrome. And even though I could see Mark was disappointed, just as I was a little too, it was then I looked over at Aubrey, saw her little face and I realised she was a gift. The most important one I had ever been given. You see we had waited a while for our Aubrey and so she was extra extra special to me.  Mark took a little longer to come to terms with it. I remember a few days after she was born telling him to suck it up and pull himself together (I was so mean) but here’s the thing, I knew my wonderful husband, although finding it hard to come to terms with at the beginning, I knew there was no doubt he would be a fantastic Daddy and together we could take on the world. Our daughter having Down syndrome wouldn’t hold us or her back.
After a week in hospital it was confirmed Aubrey had Down syndrome and we were discharged with a number of leaflets.  Aubrey had good hearing and her eyes looked great. They only detected a slight murmur in her heart so we felt very lucky. Three weeks later, however, we were in A&E as Aubrey was going into heart failure. What they had failed to detect was that Aubrey had not 1 but 3 holes in her heart… she was not a well girl.  What followed was 7 months in and out of hospital, one more rush to the hospital in the middle of the night and another heart failure incident combined with a few million hospital appointments.  Although Aubrey’s heart kept failing she wasn’t considered high risk, which meant the surgeons wanted her to put on more weight before having the surgery. It felt like we were living in constant high alert. I didn’t want to take her anywhere as a slight cold would mean another 2 -3 weeks in hospital. At 7 months old weighing a hefty 9lb Aubrey finally had her surgery. Yippee!! Her holes were going to be closed, at this point the fact that she had Down syndrome didn’t even register, the surgery was a success!  Aubrey did have quite a bit of fluid on her lungs but with time this would dry out. We were told to expect a big change. Aubrey’s breathing had been very fast, she would take forever to have her bottle (yes bottle – she was tube fed for a short while but I was always very determined that it wouldn’t be a long term thing). Within two weeks we were out of hospital and it was true, our daughter was different. No longer was she struggling for breath and finding it difficult to eat, drink and even sleep. She was strong and ready to take on the world and she has been ever since.
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My daughter has taught me so much already. Not only has she made me a kinder more understanding person but she has made my family a better one. We are all so grateful that we have her.  I am not a super mum by any means, we have had some difficult days and I am sure we will have many more (like most families).  But I know I am a better person having her in my life.
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Every day she shows me just how amazing she is and I feel honoured and lucky that she chose me. She has made us all a little more special. I find that I take more notice, time, effort.  I don’t take the small achievements for granted (every achievement is celebrated in our house). I try to appreciate every moment with her because every life is so precious, no matter the number of chromosomes.
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I was very lucky to meet a lovely lady at a local group who told me about PSDS and after attending a family meeting, I just knew this was the group for us. Aubrey was automatically accepted, everyone was so warm and welcoming and I was finally meeting Mummies like me, that I didn’t have to explain Aubrey or myself to.  I am so happy we are part of the Digbies group and I hope with time Aubrey will make some wonderful friends. I know with the help we receive she will go on to do great things. I’m certain she’s got the potential to do whatever she puts her mind to and how lovely is it to be part of something that knows she can too, that helps Aubrey and myself and supports her in doing just that.
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Beth – The poster girl

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I am Sarah and I live with my husband David and our two girls Hannah (almost 6yrs) and Beth (3 1/2 yrs). I still remember clearly that special 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. My pregnancy with Hannah had been straightforward and I was expecting the same journey again with all that extra experience of being a second-time Mum and I was looking forward to it all. In the weeks before our scan we had a lovely holiday camping in France with Hannah then aged 18 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 yrs – what fun we were going to have and how blessed did I feel?!!

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The peace and initial joy of being pregnant again was unfortunately rather short-lived. At my twelve week scan the sonographer suddenly announced that the baby’s neck measurement was ‘a bit thicker than normal’. This statement blissfully bypassed David but I knew the possible implications of this. I was sent off for a blood test and was told they would ring me the next day if there was a problem. David slept soundly that night but I was troubled. On my way home from work the following day I received a phone call with ‘private number’ flashing away and I knew that our life was about to change forever. The hospital geneticist was on the other end and after a five minute chat I was left with the knowledge that our baby had a 50% chance of being born with DS. I was shocked and upset but my biggest concern was telling David. We had already long decided that we wouldn’t have a termination and I knew I wanted this baby but I also knew David would struggle with the news more than I. I’m the optimist in our family but at that moment I wasn’t feeling very positive and I wasn’t sure if I had the strength for both of us.

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David respected my decision not to have an amniosynthesis and we decided to have regular scans to check our baby’s progress instead. We had a very kind, patient and understanding Obstetrician who always said ‘Hello beautiful girl’ when he saw her on the screen. His kindness was in stark contrast to the disastrous initial meeting we’d had with a Midwife who knew nothing about Down’s Syndrome and who sat opposite us behind a big desk clutching a post-it note with ‘1 in 2 risk DS. Want to keep it’ scrawled across it. In the end I pitied the woman who was so out of her depth and clearly uncomfortable with the whole thing. Maybe if I’d said we would like a termination she’d have managed better, after all there are procedures and protocols for that. It seems there is little in the way of professional, unbiased, helpful guidance and advice if you choose to continue with the pregnancy. I know I am not the only one to have experienced very poor and unacceptable care in the early days.

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For the first 24 hours I was very positive after all there was still a 50% chance that Beth wouldn’t have DS. Also times had changed, people with disabilities could do all sorts of things that were never dreamt of before and I was going to give my child everything she needed to succeed whatever she did or didn’t have. However the next day as I was getting dressed for work I broke down in tears, who was I trying to kid? This is not what I had wanted or dreamed about. My child wasn’t going to be able to do loads of things, Hannah now had a little sister that was going to be a burden rather than a friend and I feared a loss of the full life that we were lucky enough to enjoy. For ten days I wallowed in this mindset and I wondered how I was going to get through a whole nine months of not knowing.

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Thankfully my mind was changed by a series of coincidences over a weekend. We were sitting in a park watching loads of kids running about having fun and Hannah was rolling down a big grassy bank. David commented that that you don’t see many kids with DS. We discussed the 92% termination rate in the UK and really felt the heaviness of ‘going against the flow’. I said that my biggest fear was that we would be isolated and cut off by people as I watched groups of friends and families enjoying time together. We started to walk home across the field and for a while it was just me, David and Hannah until the moment was broken by a young boy charging towards us with a huge smile and his arms open wide followed by his Dad trying to keep up. The boy was called Joe and he had DS and it also happened that David knew the Dad from a while back plus they were enjoying the park with a big group of friends. Our fears or being the only one with a child with DS and being isolated from people subsided instantly. We told him about our situation and felt so reassured ‘the highs will be higher and the lows lower’ he said. We would later see how wise his words were. On our way home we stopped to buy a Sunday paper and the first thing I saw was the beautiful cheeky face of a boy with DS who had just done some modelling for M&S. From that moment on I felt much happier and David was too.

As it goes I didn’t have too long to find out if Beth had DS as she arrived 2 months early! She needed surgery to fix a bowel problem (duodenal atresia) and it was then we found out about the hole in her heart. My obstetrician was very apologetic that he hadn’t spotted the hole on the many scans we had but I was glad I hadn’t known before – one less thing to worry about.

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It was hard initially once Beth was born, Hannah was just over 2 years and Beth needed feeding with an NG tube because she was too week to suck. At 6 months she had open heart surgery at The Royal Brompton Hospital and this is this day we celebrate the most because it was the turning point for Beth. She was suddenly more alert, breastfeeding and everything just felt a bit more ‘normal’.

So we fast forward to today and I feel so fortunate to have my two little ladies. It turns out Beth isn’t a ‘burden’ to Hannah but rather ‘the best sister ever’! The bond between them is very special and I have seen equal adoration. Hannah is brilliant with Beth and helps her to do so much. Beth idolises Hannah and copies her every move. Beth is doing so well and when I look back at the weak and frail little baby to the strong bouncing Beth today I cannot believe how far we have all come. Beth loves being at preschool and they love her too! Who would have imagined that Beth would be ‘the poster girl’ who recently was a winner in The British Journal of Photography ‘Portrait of Britain’ competition? Certainly not me!! The country may only see her gorgeous face for a couple of months but I have the joy of seeing that smile every day!

As for daydreaming about camping ….. Well we camped in France this year and are hoping to camp next year in Cornwall. We had to wait longer for that camping holiday which made it all the more special because after all we all know ‘good things come to those who wait’ and Beth has taught us all the power of patience. I still feel very blessed and our life is fuller than ever. As for David, well he couldn’t be more in love with or be more proud of his two girls and I no longer have to try and be positive because we ARE positive about our life now and in the future.

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NB. Thankfully the Don’t Screen Us Out Campaign group are working tirelessly to improve how people are told the news and what help there is available for them. Beth and I marched to parliament with the group to make sure the voice of those directly affected by DS is heard in the debate. I have also had the privilege of speaking to midwives at our local hospital with another PSDS mum about our experiences and how they can improve their services. I will also be starting work with BLISS in the coming months providing extra support for parents on the neonatal unit. Beth has literally changed the course of our life and this new direction is so exciting.

Three is the magic number

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Nick and Sam live in Burgess Hill with their gorgeous three year old son Alex. Here Nick writes all about their journey with Down Syndrome so far…

This is Alex. Just after his 3rd birthday, we found out that he had Mosaic Downs Syndrome, which came as a bit of a shock. Rewind just over 3 years and like every other new parent, we were overjoyed when Alex came into the world. Both Sam and I are secondary teachers, and is customary with the profession, Sam’s maternity leave started all of 48 hours before Alex was born. Over the course of the following 2 years, we noticed that Alex’s development was a fair bit slower than his peers. He has two male cousins who are 12 and 5 months older than him but he was never close to hitting milestones at the same stage as them. After Alex started nursery, being surrounded by other children, it was suggested that we go to a speech and language drop in session who referred us to a paediatrician who recommended testing for DS (in her words, “just to rule it out”).

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Initial blood tests ruled out DS but Alex was identified as having ‘Trisomony 5p’ which is a triplication on part of chromosome 5. Having not paid much attention at GCSE Biology, the inevitable Google search mechanism kicks in and both Sam and I spent hours searching for information about it but with little reward. However, after both Sam and I being tested, the same genetic anomaly was found in me and according to the doctor, I am ‘fairly’ normal(!), so back to square one we went. After a cheek swab test, Alex was finally diagnosed with Mosaic DS in November 2015 after nearly 13 months of tests. This means that only some of Alex’s cells have the extra chromosome 21. The proportion of cells with the extra chromosome varies throughout his body but it is impossible to know the distributions without doing biopsies of every type of cell.

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It hit us out of the blue. For over 3 years, we had a ‘normal’ little boy, but now he was a little boy with DS. He had a label. What would this mean? It is still hard to put into words how we felt the first few weeks. Our little boy was still the same person that we had cuddled each day and bathed each night, but now there was a reason for the slower development. As, I assume with all parents of children who have DS, the inevitable worries start creeping in. What does the future hold? Will he be able to live independently? Will he have relationships? Will he hold down a job? How will this affect his life?
However, when logic kicks in, I remembered back to the previous 3 years and they were the same questions that I was asking before we had any diagnosis and even before we realised he was developing more slowly than other children. As parents, we have no idea what the answers to the questions are, but what we do know is that we would not change Alex for anything. It was strange, when we were with him, nothing had changed. He was still troublesome, mischievous, fun, loving and regularly threw a paddy when the TV was switched off. However, once he was in bed, the questions kept coming back about his future and it was tough to switch off the emotional part of the brain and listen to the logical part.

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It was during one of the epic battles between emotion and logic that Sam found PSDS. As parents, we were in need of support from families in similar situations and for Alex, we wanted him to grow up knowing people with DS. We attended our first coffee morning in May 2016 and met so many nice parents and children that we knew we had found somewhere special. Although I only stayed for the first hour (unfortunately, cricket matches take up every Saturday during the summer), Sam and Alex had a great time meeting, chatting and playing with everyone.
With this new found support, I wanted to give something back to PSDS and raise some money. After a game of squash with my friend Jeremy at the beginning of June, I floated the idea of walking the 100-mile South Downs Way to raise some money. Within 2 weeks we had booked it in, started planning the route and had worked out training schedules to get ourselves into the right shape to take on the challenge.
The training did not go quite to plan. Life got in the way and before we knew it, the walk was two weeks away and we had done very little. I had done a bit in the Brecon Beacons with my students on DofE, but a lot of time was spent drinking tea on the side of a mountain while sheltering from the incessant Welsh rain and waiting for students to reach their checkpoints. Jeremy had done less. It was not a good start and we decided that we needed to make the best use of the final two weeks of preparation. I managed to get 3 long(ish) walks in, Jeremy got 4 but then we went to Morocco for a week on our family holiday. A week of G&T’s and lots of food by the pool is not the best preparation for 5 days of walking if you are ever in that situation.

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The walk was a success, in the end. Plenty of blisters, aching muscles, sore knees and the ever increasing smell as the temperatures rose did not stop us from completing the 100-mile hike and raise nearly £4000 for PSDS (http://www.psds.info/news-events/114-south-downs-stroll-a-thon.html).
Alex was there at the finish line with Sam and the feeling of completing an endurance challenge was very quickly replaced with the pride of being a parent to a gorgeous little boy. He was smiling from ear-to-ear and gave me the biggest hug. Every day he makes us smile, laugh and pull our hair out (I didn’t have much to start with). He may have a diagnosis of Mosaic DS, but that is not what defines him. He is his own person. He has his own ideas. He can be whatever he wants to be. He can do whatever he wants to do in life. He will have the love, support and guidance of us unconditionally, for the rest of our lives.

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