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?!!
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.
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.
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.
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.
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.
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.
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”).
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.
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.
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.
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.
Alix and Justin live in Guildford with their two gorgeous sons Charlie and Sam…
I’ve always been of the view that there’s a reason for everything, and that whilst it might be impossible to see it in the moment, in time I’ll begin to understand ‘why’.
That philosophy has particularly been in the forefront of my mind over the last 6 months as our family take a ride on the rollercoaster that you jump on when you have a child who happens to have DS. Sam is the younger brother of Charlie, and my husband Justin and I didn’t know before he was born that Sam would have DS. To be honest neither of us knew much about the condition, so when, within the first hour of him being born, it was confirmed by the paediatrician that she suspected he had an extra chromosome we had no idea what that meant in reality. In states of shock we were handed some leaflets about DS and left in a private room to get our heads around the news. I remember being scared to let myself bond too closely with Sam as he wasn’t the ‘perfect’ son I’d expected, and worried about whether Justin & I were up to the job of bringing up a child with additional needs. Little did I know then that Sam would bring something to our family that we never knew we were missing in the first place.
Sam & I stayed in hospital for 5 days. On top of getting to know our new little man and grappling with all the normal challenges of a newborn (feeding was terrible!) it seemed like every hour another specialist was coming to see us to do tests or with more concerns they had about Sam’s health; we saw haematology, physiotherapy, audiology, ophthalmology, and on our final day cardiology. Sam spent some time in SCBU too having a platelet transfusion after concerns that he might have a bleed on his brain. It really was the toughest time emotionally, and completely at odds with the joyous first week we’d spent with our first son Charlie.
The thing I had no appreciation of when we were first told about Sam, was quite how many significant health problems are linked with DS. In hindsight Sam seems to have been quite fortunate, as the main 2 things he’s had to contend with are 2 holes in his heart (a large VSD and a small ASD) and complications with his bloods involving having very low platelet levels, low haemoglobin, and abnormal white blood cell counts (a condition we have learnt is unique to children with DS called TAM). Whilst 2 holes in his heart might seem the more significant issue, it is the imbalance of his bloods that have caused us most concern as we understand that 25% of kids with TAM will go on to develop childhood leukaemia, predominantly around 1-1.5 years of age. For the first couple of months of Sam’s life we seemed to be taking him to have his blood tested on a virtually daily basis, but throughout all the medical stuff Sam has been just amazing. He has an astoundingly sunny and laid back character and not once has he complained about having cannulas inserted, bloods taken, or scans carried out. His immense strength has I am sure made it easier for Justin & I to support him through it all.
Within Sam’s first week we were referred to the Cardiology and Haematology teams at Great Ormond Street Hospital in London. I had heard people say that GOSH is an amazing place, but having spent so much time there I really can say that whilst the facilities might be amazing and the place kitted out more like a nursery than a hospital, it is the staff at GOSH who make the place so unique. Sam had his open heart surgery when he was 3 months old. The experience of watching your little baby be sedated in the anaesthetic room and handing him over to be operated on was awful. ‘Keep yourself busy whilst you wait for news that he is out of theatre’ people told us, ‘Don’t hang around in the hospital’ they said. So Justin & I duly took Sam’s empty car seat and set off (without going too far!) to try and take our minds off what was happening to our precious little boy. Needless to say we couldn’t divert our thoughts from what might be happening in the operating theatre, so after much traipsing the streets of London we found ourselves in Wagamamas ordering food. I don’t think I’ve eaten that many noodles or dumplings in one sitting in my life! After about 4 hours we headed back to the hospital and arrived just as Sam was coming out of theatre to be taken up to ICU. He’d thankfully done amazingly well and the doctors were really pleased, but the relief of the positive news coupled with seeing our tiny little star hooked up to tubes, monitors and chest drains in ICU was the point the tears finally started rolling down my face. Both Justin & I were elated, but also absolutely exhausted.
It was before Sam’s operation that we joined PSDS, going along to one of the monthly family gatherings at Lloyd Hall in the hope that we might meet families similar to ours who could help us learn more about the journey ahead of us. I vividly remember entering the hall on that first Saturday in February and being so warmly welcomed by Helen, Vicky & Sarah. Very quickly we learnt that Sam’s problems with feeding, putting on weight, and the holes in his heart were ones that many people in the room could identify with. And it gave us real comfort to look around the room at all the gorgeously happy children playing without a care in the world, having come through the other side of operations like the one Sam was facing.
We’re now just over 6 months in and the difference in Sam since he has recovered from his surgery is amazing – and it has been like getting to know a whole different baby. He now actually cries, something he’d probably not had the energy for before. He is no longer on high calorie formula as he can now feed well without getting knackered, plus we even started weaning our hungry little boy onto purée at 5 months, which he seemed to thoroughly enjoy, evidenced by the amazing rate at which he’s been piling on the pounds!
Fortunately his bloods also look to be improving for now. We’ll still have to get them tested regularly until he’s 5 years old, and we have to get through the ‘danger zone’ age of 1 – 1.5yrs before we can really relax, but at least we can have confidence that he’s being closely monitored by the best in the business.
So now at 6 months old things are settling down a little; Sam is much more alert and inquisitive, and we’ve finally got around to going along to a few baby groups. This is presenting a whole new challenge for me as his mum as I’m adamant not to let Sam’s DS be the thing that defines him. I have empathy for the other mums who clearly don’t know what to say to us because they can see Sam is a bit different, as this could well have been me 6 months ago. So I’m trying to work out whether there’s a way that I can make it easier for others to not feel awkward around us or sorry for us, but I guess that only by getting to know us and seeing how my gorgeous little boy lights up the room will they get that.
Back to my first point about ‘why’; I can already see so many positives that Sam has brought to our lives and feel sure there are even more to come. On a personal level I feel far more balanced and considerate than I used to be and able to focus on the things that really matter in life. Justin & I are certainly much stronger with Sam in our lives as we’ve pulled together to get through the tough times. All our family and friends are completely behind Sam, wanting the very best for him and showing both him and us more love than I ever thought possible. And we’ve met and made friends with a whole new group of lovely people who I know are going to enrich our lives even further. On top of all that my crazy husband Justin felt compelled to run his first 54 mile ultra marathon last month in gruelling conditions across the South Downs, all to raise money for GOSH and to help children like Sam – something I’m sure he’d never have considered before.
When we met Sam for the first time and were sitting in our hospital room feeling sad about his diagnosis, I never imagined what a positive impact such a little person could have and how far away from sad I would feel today. Sure, we’ve had a challenging 6 months, but I’m no longer afraid of the future as, whilst I know Sam might need a bit more time and support on his journey, I’m excited about doing whatever I can to help him get to wherever he wants to be.
From the moment you were born I had this instant love for you. I couldn’t stop smiling. We called you our ‘Precious Cargo’ and to us you were perfect. I had the odd sad moment, with random thoughts that perhaps you would never get married or go to a night club (yes they were the thoughts that came in to my head!) but of course I soon realised you could do any of those things.
Perhaps because you had Down Syndrome it somehow made me even more determined to show you the world and all it had to offer. I started to sign to you at 3 months old which seemed a little early but it paid off as by the time you were 11 months old, you were signing too. Sure Start centres were a godsend and we spent a lot of time at baby signing classes, toddler groups and all the other groups.
By the time you were 5 you were attending swimming, gymnastics, trampolining and your favourite, drama classes. It came as no surprise to us that drama and dance was your favourite as you come from a large family of dancers and actors, so as well as your much loved PSDS drama you attended the local drama school, first in the special needs class and later in the mainstream class too. I did wonder how you would cope with this but all my fears were put aside when I watched your first showcase. You were a little star, what you might have lacked in timing you sure made up for in enthusiasm and your beaming smile.
A couple of years ago we decided to enrol you into a model/performing agency and it wasn’t long before you were called to a casting in London. It was for a Sainsbury’s TV commercial. I didn’t really know what to expect but when we got to the audition there were lots of other children there they all had a disability too. It was great that Sainsbury’s wanted to include a child with a disability in their TV commercial. You went into the audition room on your own, which you were more than happy to do as you were full of confidence. Before you went in I could hear from previous auditions that the children had to dance to a One Direction song. Great I thought, as you have a real disliking of One Direction from something you didn’t like to watch in one of their videos (sorry boys), but luckily it wasn’t the song you associated with the video and you came out of your audition beaming. A good experience and good for confidence building I thought and we went back home.
A couple of days later I was informed by your agency that you were heavily pencilled in and then the next day it was confirmed that you had the job. We were all over the moon for you. A few days later you were called to wardrobe where you met your screen mum, dad, brothers and sister.
The fun started when you were called to film the commercial. You had the time of your life and learnt so much about lighting, cameras and following directions. It was hard for you as you were not told what you had to do until you got on set so there was no preparing you for what you had to do but you coped amazingly. On the other hand I felt a little nervous as there were understudies standing by in case you or any of any of the other children didn’t do what they were supposed to! But I soon learnt to relax as I knew you would just be you, whatever that might bring. You had such a fantastic time getting to know the cast and crew. You filmed for 2 days and got treated like a prince. It was a fantastic experience and I can honestly say you were not treated any different to the other children. The commercial was shown on TV around Easter time 2014 you loved watching yourself and your school showed the commercial to your classmates. It was great for your self-esteem.
A few months passed and you were called to another casting in London for a Superfast Broadband TV commercial. This time you appeared to be the only child auditioning who had a disability. I went into the room with you, there were about 20 adults in the room but you didn’t let this phase you, amazingly you took it all in your stride. They asked you lots of questions and you answered them all with confidence. I was a bit worried when one of the ladies auditioning you who was American asked you what your favourite candy was. I thought to myself you are not going to know what candy means but luckily you had recently been trick or treating with friends and answered ‘popping candy’ as you remembered you had got some popping candy in your bag. “Phew, saved the day,” I thought.
A couple of days later we were all thrilled again to hear from your agency that you had been chosen to be one of the 2 children in the TV commercial, again you spent a fantastic time filming. You had to pretend to win a game on an iPad, not so easy as the iPad was actually just a blank screen but we managed to get around it, when one of the crew shouted ‘Spiderman’, you were able to pretend to win the game. Another great experience and more friends made. The commercial was shown on TV around Christmas time and again you loved watching yourself and showing your classmates!
In August you auditioned for a corporate film that was filming in Brighton. You had to do some apple bobbing with another little boy who was also 10years old. You made another great friend who didn’t judge you in the slightest. The crew were fantastic although you were clearly after the director’s job!
You have gone from strength to strength and are currently on two TV commercials;
In March you filmed for Lloyds Bank TSB where you were a background actor. You got to see the beautiful black horses. It was lovely to see you in between shoots interacting and playing with the other boys totally accepted and treated no differently (there were about 30 other children there!)
The following week you filmed for a CBBC ident which we were told is shown 10 times a day for the next 5 years! You just love watching yourself and love buying things with the money you get. You have already chosen to buy Darth Vader gloves when your payments come through! (all those who know Ben know he is a huge Superhero and Star Wars fan)
So now you are looking forward to your next job and as long as you are happy to continue we will be behind you and support you all the way. We are so proud of you.
So here’s to you Ben…Follow your dreams our ‘Precious Cargo’.
Our second son George was born in November 2015
My wife Caroline had a ‘good’ pregnancy and George arrived speedily in the early hours of Friday morning.
We were left to sleep for a couple of hours, George then had a thorough round of baby checks, it was assumed (as he was our second) that he’d take to breastfeeding and we were discharged.
With the excitement of a new baby and introducing George to his brother Ben and one set of grandparents, we were as happy as parents can be.
But over the course of that first day it became very apparent that all was not as it should be.
George was unable to feed from a breast or a bottle. More milk ended up on him than in him and there was no movement at the other end either.
It got bad enough that George started choking and turning blue when we tried again to feed him and within 24 hours we were back at the hospital where he was born, exhausted and scared.
The A&E Doctor took us through a little charade of not knowing what was wrong (he knew – but 2am was rightly not the time to tell us) and kept George in for “observation”.
The following day after doctors rounds, a consultant lead my wife and I into an office, sat us down and in a matter of fact way told us:
“I’m pretty sure George has Down’s Syndrome”.
Our world crumbled.
It’s difficult to put into words everything that flew through my mind in that split second after diagnosis.
As I stared at Caroline in open-mouthed disbelief – my mind raced forward, detailing 20 years of George’s life.
Why us, why him, did we do something wrong, will he be deaf, will he go to school, will he make friends, will he be bullied, will our other son be bullied because of him, will he fall in love, will he get married, will he find a job, will he be independent, will Caroline go back to work, how will I hold down my job, will we have to sell our house, will it crush our marriage, what will happen when we’re not there to look after him?
All of that and more, before I could even utter to my wife “it’s going to be ok” (I believe they call that – putting on a brave face).
There was more in store for us in that first 48 hours as George still hadn’t passed anything and started to cough up a foul sludge. The boy was so poorly. There were moments I thought he wouldn’t make it. My heart broke again and again.
On the Sunday, he was transferred by ambulance to the Royal Alexandra Hospital in Brighton for intensive care.
He had/has Hirschsprung’s disease – a condition where the intestine is unable to pass stools. Surgery would be required.
Let’s jump forwards…
George spent his first month in a hospital bed, came home in time for Christmas and we provided very hands-on care at home (3 enemas a day).
In February George underwent a ten hour surgery for his stomach condition.
In laymen’s terms, he hadn’t poo’d for the first three months of his life. Two days after surgery he could. I have never been so happy to see a dirty nappy in my life.
It’s now April and George is just shy of six months. To all intents and purposes he’s just like any other baby now. He sleeps, he breast feeds, he cries, he giggles, he poops.
I want to finish here by talking about where my head is now.
Lots of those worries I had when I first heard the label ‘Downs Syndrome’ are still there, but everything has slowed down and it’s all easier to process.
Caroline and I take one day at a time and we have been overwhelmed by the care and support we have had from our friends, family and the countless medical staff we’ve met along the way.
We’ve also reached out and met new people in similar circumstances – and are so grateful there’s an organisation like PSDS who’s members can fill in any knowledge gaps and offer more than support – friendship is the word.
Every parent of a child with Downs Syndrome has a different story to tell, just as every child who has Downs Syndrome is different.
The unifying experience seems to be one of love.
Nobody asks for Downs Syndrome to enter their lives and it’s an overwhelming occurrence when it does, but love and time mends that.
George is George and we love him dearly. He’s a child and not a label.
You can read our story and keep up with George’s progress at www.georgejonessite.com
I am Lu, I live with my partner Derek and my two sons, Nathan aged 8 and Billy aged 6. Billy has Down’s syndrome (DS). Both my boys are brilliant and of course I love our family unit. I have to say that I haven’t always been comfortable with Billy’s diagnosis, this may have been down to the negativity and lack of support I received when DS was detected. Let me explain…
…….Our first round of antenatal screening detected a 1 in 100 chance of the baby having DS. That’s OK we thought, we don’t need to know. The anomaly scan at 21 weeks showed nothing unusual ; ‘congratulations your baby is completely normal’ the consultant sonographer informed us. The terminology now gets under my skin, what is ‘normal’ anyway but at the time it went over my head.
At 30 weeks duodenal atresia was detected in the baby – this is a condition in which the first part of the small bowel has not developed in to a tube but is closed. This is very common in babies with DS so we decided to have an amniocentesis at this point to be sure and be prepared. We were given the results over the phone and asked to come in to hospital to talk about life with a child with DS. The midwife we came to ‘discuss’ it with, said she didn’t know much about DS and did we want a leaflet? She handed over a wholly inappropriate booklet but it was the only one she could find. It was from an American DS research company and contained some great statistics about DS and childhood leukaemia not to mention early onset dementia –no wonder I wasn’t very comfortable with the diagnosis!! When we went to ‘discuss’ this with the same consultant sonographer, he remembered that we wouldn’t have terminated the pregnancy and just told us that ‘nothing had changed’. Hindsight is very illuminating thing and retrospectively I think he was trying to put a positive spin on my baby who will battle leukaemia and dementia …….as you can tell my pregnancy brain was not thinking logically and inside I was fuming!! Nothing had changed???? Nothing had changed??? The only thing that HADN’T changed is that we were having a baby!
No support was offered, no explanations of what life with DS might mean. I was in a panic, I wasn’t strong enough to cope with a disabled child, I didn’t know anyone with DS. Do they speak, do they walk, do they learn, are all adults with DS badly dressed and have bad haircuts and hold on their elderly mothers hand while in the supermarket? Blimey I wish I had heard of PSDS back then! Literally all the knowledge I had of DS was a VERY out-dated stereotype!
Thankfully I didn’t have much time to panic as Billy arrived 6 weeks early and parental instincts took over. Billy had his corrective bowel surgery within one day, I really don’t remember feeling out of control, just quietly terrified.
When I had finally calmed down, being surrounded by the comforting arms of Portage (a home-visiting educational service for pre-school children with additional support needs and their families) and had had appointments with paediatricians, I finally realised that we had another wonderful son. This one would have different challenges but with help we could cope together.
We have been members of PSDS since 2011 and honestly it has been one of the best things we have done. PSDS are so positive about DS and that still affects me profoundly. Why shouldn’t we be positive about DS? Our children are clever, cheeky, stubborn, naughty, fun…everything other children are but they have an extra bit of cute with that extra chromosome!
Now, 6 years down the line I think ‘it’s only bloody Down’s syndrome’, (when I’m having a difficult day I think ‘bloody Down’s syndrome!”). Yes, Billy has challenges but they aren’t insurmountable. If we can’t meet the challenge head on, we go round and find another route, we cope. I’m not saying it has been easy, it hasn’t, there are endless hospital appointments, regular blood tests (very traumatic when your blood vessels are nearly invisible) not to mention the chasing of appropriate support at school, developmental targets which need to be practiced and the bucket load of patience you need which can sometimes be the toughest obstacle. Conversely it isn’t all tough, Billy is still a brilliant son and brother (did I already mention the extra bit of cute?!)
My journey with DS (and it is a journey) has motivated me to talk to midwives about how important their language is when giving a diagnosis of DS…not to use the words ‘risk’, a term which infers danger, harm or loss, or ‘sorry’ which infers sadness, distress or pity. Professionals need to make sure that “congratulations” is among the first words new parents hear. Changing the language used with DS is so simple, costs the NHS nothing and makes such a difference to the start of the DS journey.
Also together with our local DS support group and an extremely supportive midwife supervisor, I have developed a ‘Congratulations pack’ which will be given out to new parents as soon as their baby is born. It contains appropriate Down’s Syndrome Association leaflets, Portage leaflets, PSDS leaflets and information about where to get DS support. The aim, locally at least, is that new parents are properly informed about DS and are signposted where they can get appropriate advice and support should they need it. I want to show new parents that DS is probably not what they would have wished for but it WILL be OK. Hopefully new parents won’t be as scared, bewildered or as ridiculous as I was!
I have also talked to year 6 children at Billy’s school to emphasise that it is OK to be different and like any other person they come across in life they should be accepting of the differences. Inclusion is definitely a 21st century phenomenon and in some ways our children have been born at the best time (don’t get me started on the non invasive pre natal test!).
Six years since the start of my DS journey and I now consider myself a bit of an expert. Most of my friends have children with DS, the children have fashionable hair dos and are dressed fabulously. As I said, hindsight is such an illuminating thing.