Love and Time mends

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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.

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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.

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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).

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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.

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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

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Hindsight is an illuminating thing

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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.

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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!

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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?!)

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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.

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Dreaming of the future

 

imageIt was late evening on Easter Sunday 2012. We had a wonderful afternoon out at the pub with friends, probably our last as a family of three, as ‘Mr Chipper’ was due in 3 weeks time. Our 2nd boy to complete our family. I fell asleep dreaming of the future… an adventure holiday camping in France, kayaking down the Dordogne River with my two boys diving in and out of the water as the sun set….

Lance was born on Easter Monday morning just before midday. He was perfect with a complete head of white blonde hair with a ready made mohican. I remember lying in bed listening to Mike introduce himself to his son and describe him… his button nose, beautiful blue eyes, round face just like Mums. He was perfect. We were happy.

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Then it happened. As I was cuddling him he looked at me and whatever he did with his face prompted my head to go “Don’t do that!! It makes you look like you’ve got…” The seed was planted in my head. Down Syndrome. Then like the best Sherlock scene all my senses were heightened.

They didn’t do that check with Dexter.

Why do they keep checking his hands?

That was a ‘look’ from the midwife to the paediatrician.

The midwife’s smile no longer looks as natural.

In slow motion I listen to the paediatrician say “Because it’s Easter Monday and a Bank Holiday I can’t discharge you, I need the Registrar to come check over Lance before you can go home. There’s nothing to worry about. I’m just going to page her to come down. OK?” Then I knew. Everyone left the room and there we were… I was sitting on the bed putting Lance’s very oversized baby grow back on and Mike was standing by the window. At that moment I made the hardest decision of my life. I opened my mouth and said “Sit down Mike and look at Lance, I think he has Down Syndrome”. Mike replied “No… Really?”. Then after what seemed like an eternity of silence he said “Yes, I think you’re right”. My perfect Dordogne holiday imagine shattered like a mirror into a million pieces. One of the happiest days of my life just clouded over. But he was there in front of me… this beautiful, helpless, perfect little boy. I was his Mum.

And then the door opened and the Registrar, Paediatrician and Midwife walked back in.

When they finally said “we think your son has Trisomy 21… some people know it as Down Syndrome” we were prepared and didn’t actually make any reaction; just nodded in agreement. I later found out that this freaked them out.

The next couple of hours and days were a haze of emotions as we adjusted our expectations, defaulted to our new normal and got on with life as a family of four.

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Six weeks (and a LOT of routine hospital checks) later we were delighted that Lance hadn’t been born with any of the heart or other major organ problems often associated with Down Syndrome. But soon after the ‘niggle’ started. Mike was the first to comment that his eyes didn’t seem to be focussing on anything. Then at the routine Ophthalmology appointment at nine weeks, it was confirmed that Lance was not ‘fixing and following’ – a milestone normally achieved by week six of a baby’s development. They assured us not to worry as Lance was born three weeks early and this combined with the fact he had Down Syndrome just meant that he was probably slightly slow off the mark. We were told to come back in eight weeks for a follow up.

Every day of that eight weeks we celebrated the joy of having two wonderful sons and settled into family life… at the same time the paranoia set it. Can Lance see this? Was that a fix and follow? Grasping at every little glimmer of hope but no matter how much we willed it to happen, we had to admit that he couldn’t seem to see. The days leading up to his next eye appointment seemed to pass very slowly. And they confirmed what we already knew – yes, he’s not fixing and following. Since his eyes were physically healthy they concluded that he most likely had ‘Delayed Visual Maturation’. Although this is not a common diagnosis it isn’t unusual and, as the title suggests, the expectation is normal vision just slightly later than the norm. We were told to come again in eight weeks! And she even used the phrase “we’ve just got to wait and see what happens”… surely no pun intended.

Needless to say Google was the first point of call when we got home.

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Delayed Visual Maturation (DVM) is characterised by an otherwise normal eye exam in an infant that does not fix or follow or otherwise respond to a visual object. In an infant with DVM, the eyes, including the retinas and optic nerves, appear normal and the infant is otherwise neurologically normal. By definition, however, at some point in time, usually by about 5-6 months of age, the infant will start to fix and follow and will then appear as a visually normal infant.

But is Lance ‘neurologically normal’ given that he has Down Syndrome?

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It was at this point that we were introduced to PSDS, came along to a Family Morning and became part of what we now know as our ‘extended family’. They were a world of information and answers, of positive stories and beautiful children. Children with Down Syndrome can achieve their full potential with early intervention and the right differentiated education. They are brilliant visual learners… but all the children could see. No one had heard of DVM. No one had faced the challenge of getting a blind child with DS reach their full potential. But they did know someone who might be able to help and gave me the details of Maggie Woodhouse.

Next point of call was to contact Maggie, a Lecturer & Optometrist at Cardiff University who specialises in visual impairment associated with Down Syndrome. She was able to confirm that DVM was in no way connected to having Down Syndrome but, given that she had never experienced this combination before, she wasn’t sure if the fact that Lance had got Down’s would affect the how long his vision would take to mature. Her advice was to get a referral to a Visual Impaired Teacher (i.e. a Teacher who works with the visually impaired) and get stimulating his eyes.

So that’s what I did.

A wonderful woman from Surrey’s Physical & Sensory Support Team came to visit us and taught me how to stimulate his eyes. Twice a day for ten to twenty minutes I did a visual workout on Lance’s eyes. Anyone who came upon us raving with glow sticks under a foil insulation blanket would have probably called social services but whatever it took I was willing to give it a go… because I couldn’t imagine the alternative. Although I am the eternal optimist, every day that went by the elephant in the room just got a little bigger. What if it isn’t DVM and Lance is blind? My heart would sink and eyes would well up… Down Syndrome was easy to accept but blind as well, tough. Family and friends were a great support but every time one of them said “I’m sure he just looked at me” I was getting more and more frustrated. All of Lance’s other senses were maturing as normal so he gave a good impression he could see but I knew if you stripped away the sound, touch and smell there was no reaction from him. A mother knows and I knew.

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Weeks passed and soon Lance was five months old. We had acquired black and white books, flashing balls, tinsel pompoms, mirrored blocks and a spinning, LED heart wand in our box of tricks but still nothing. He made no reaction when I crept up to his cot in the morning and put my face right in front of him. Cracks were starting to appear in my optimism.

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Then it happened. I had bought an ‘Infant Stimulation Mobile‘ with high contrast, visually stimulating shapes especially for infants with developing eyesight a couple of weeks before and finally got around to putting it up in Lance’s cot. We were doing our normal bedtime routine and I put Lance in the cot whilst I ran his bath. When I came back in to get him he was lying directly under it, hands clasped together looking at it. How did I know he could see it? It was just obvious and when I tapped it gently his eyes followed it. I called Mike up and told him to go into Lance’s room. I didn’t say why as I wanted Mike to see for himself and form his own, unbiased opinion. He came out of the room smiling! We hugged. The collective relief and overwhelming joy both of us were feeling went unspoken. We just knew that everything was going to be ok.

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His next eye test confirmed that he was fixing and following – at six months he had finally achieved the six week milestone. Get in there!

He was finally smiling back at me and at the spoon offering him food. He took his time but he got there. And he taught me the importance of staying positive, having patience and maybe, just maybe, made me realise that there are harder things to deal with than Down Syndrome and we should count ourselves very lucky that we have a very healthy, happy boy.

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Lance is now almost 4 years old and he is very much achieving his potential. With the help of PSDS, Digbies, Central Surrey Health, Barnettwood Pre-school, Happyminds, Childminder Jane Bull and the support of friends and family, Lance will be starting mainstream school in September. And I am back to day dreaming about that adventure holiday kayaking down the Dordogne with my THREE boys (and before you ask… yes, my family is now very much complete!!!).

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PSDS and Sam turn 10

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10 years ago this week, a midwife handed me a gorgeous boy – Samuel James Michael Brackett – our son. He is handsome, smart, vivacious, engaging and has a wicked sense of humour and PS he has Down syndrome. Within weeks of his birth he inspired us to set up the wonderful charity, PSDS with two other families who are now very close friends. PSDS now supports nearly 70 families and to celebrate the 10th anniversary of PSDS (and Sam), I thought I would share some stories.

For the regular readers of the PSDS blog, you will be familiar with the scenario Pete, Kate and I experienced in February 2006: a baby, but not quite what any of us was expecting. From the moment a team of doctors scanned his heart at two days old and I squeezed my own mum’s hand throughout, I knew I would love him unconditionally and forever. Now I know that I was handed a gift on 1 February 2006 that only a few families will ever experience.

Week 1 – February 2006 – 10 things the doctors told us:

1. He will never get married

2. He will never drive a car

3. He will always be different

4. How sorry they were

5. He won’t have a normal life (who does?!)

6. “Downs” are very loving

7. He won’t develop like other children

8. He will probably suffer quite a lot of illnesses and has a high degree of risk of life threatening illnesses

9. He might speak but probably not clearly

10. Poor you.

WRONG, WRONG, WRONG

Week 520 – February 2016 – 10 things he has achieved:

1. He is in mainstream independent prep school

2. He can talk clearly (and read and write)

3. He can ride a bike, swim and ski

4. He loves roller coasters

5. He loves the most scary zip wires

6. He can play the drums

7. He can ride a scooter

8. He makes us laugh every single day

9. He beats me on the Wii

10. He sings in the school choir (in Latin!).

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But more seriously, what has this little chap taught us? Sam is tenacious; everything he does is harder for him than the average child but he perseveres; he laughs; he gets annoyed; he does not judge; he makes no pre-judgments of people and he has the highest emotional intelligence quota of anyone I know. People stop in the street to speak to him, stroke his head (bit weird) and just smile. He unites people; the group hug is a daily feature in the Brackett life and he succeeds. He is embraced by his peers; supported by his school and the community and never ever fails to stop amazing me.

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In his ten years so far he spent his first few days in SCBU, has had four bouts of pneumonia (always hospitalised), two operations for grommets, wears hearing aids, wears glasses and has had major open heart surgery so he has taken us through our paces and tested my stress levels but he soldiers on. On the day after his open heart surgery aged 5 I walked into ICU to find him surrounded by “his ladies” (the nurses) hunting for his favourite DVD. At school he has his followers – “my Jemima’ and “my Isabella” – the kids don’t patronise him – they adore him. His relationship with his sister, Kate is special – close, supportive and engaged.

One story his TA shared with me encapsulates how he impacts on his friends. A new boy came to his school to look around and spend the day. At break the boys went out to play football (oh yes – he can do that too) and as usual Sam was running up and down with them and then the boys (all only 8 at the time) slowed the pace of the game and the ball was passed gently to Sam for him to kick – his turn. The new boy not knowing the rules barged through and kicked the ball only to be met by a huge shout of “That’s Sam’s ball – give it back to him”. He is included in his own way. He is one of the gang.

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So what does all of that mean? It means that Sam proved those doctors wrong. It means we still have work to do as a charity to ensure that messages that are given to families faced with the news that their child has Down syndrome include positive stories. But most of all it proves that Sam is just an ordinary child; a boy who gets dirty, is naughty, cheeky and funny; a boy who has friends, enjoys his life and brings joy to everyone around him.

I just want to end with another list of 10 – 10 things I have learned from Sam:

1. Face your challenges with a smile and tenacity

2. Do not pre-judge those around us

3. Be happy – every day

4. Care about those around you

5. Never ever under-estimate

6. Always celebrate your achievements

7. Hold your head up high and be proud

8. Group hugs work

9. It is ok to cry

10. Life may throw you the odd curve ball but embrace it and you will be rewarded.

Thank you Sam for what you have done for us all.

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Marathon Man

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Simon is married to Penny and they live in Tandridge with their children Erica (5) and Austin (2). They have been members of PSDS since 2010.

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“I’m going out for a run !”…and I shut the door and marched up the road in a huff. I’d had a disagreement over something that seemed very important at the time, and was out for some fresh air. It was early 2008 and the truth was, I hadn’t ‘run’ since doing cross-country for games afternoon at school many moons ago. As I started to break into a jog, I got about 100 yards before my legs seized up. I challenged myself there and then to be able to run one kilometre without having to stop.
Fast forward to autumn 2009 and I was crossing the finish line to complete my first marathon. It was a small event in the New Forest, and as I slowed to a stop, my wife Penny, 7-months pregnant put her arms around me and told me how both she and baby were so proud of me. We were very excited about becoming a family, and when Penny was having a rest or decorating the nursery, I was plodding around the area, logging the hours and miles, while completing another audiobook. Preparing for and completing the marathon had been both a tough and an emotional challenge.
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When our daughter Erica was born at the start of 2010, the process had not gone by-the-book, and we were delighted when the nurse asked us to look up and we saw Erica for the first time. We chose not to know the gender in advance and we both shouted “It’s a girl !” in unison knowing immediately what her name would be. 30 minutes later, we were back in a room and while Penny held Erica, I had just ended a call to my Dad to tell him that he was a grandfather for the first time when the midwife caught my attention and told me, “Simon, we have seen markers which make us think that Erica has Down Syndrome.”
I can’t really remember precisely what happened over the next couple of hours but neither Penny nor I could really take in what this meant, as the pre-natal tests had been ‘normal’. When a doctor came in and said he did not think Erica had Down Syndrome, I have to be honest when I say that I felt much better, even if I was confused. However, the midwife told us that we would see a senior paediatrician the next morning and we settled into what seemed to be the ‘normal’ post-delivery routine of starting feeding. That evening I searched the internet for information about Down Syndrome and read pages and pages of the Down Syndrome Association’s website.
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The senior paediatrician visited the hospital room the next morning and told us that he believed Erica did have Down Syndrome. He also told us that he would be getting a blood test done asap and we would be going to see the heart doctor that day to check Erica’s heart as that was a risk for babies with Down Syndrome. By the end of the day, we were glad to know Erica only had a mild heart murmur, but she did have to go into an incubator due to an infection. The separation of Erica from Penny was very tough on Penny and she was inconsolable. The upset of that night must have given Penny a super-human recovery as, caesarean notwithstanding, Penny was marching down the hospital corridor, from her ward to the SCBU, on a regular basis to spend time with Erica. Before I Ieft that night, I had changed my first teeny-tiny nappy with my arms through the windows of the incubator…I like a challenge !
A few days later, while waiting for the news of our blood test, we were overjoyed as Erica had left SCBU and her cot was wheeled into our room. She had taken it upon herself to remove her feeding tube to make it clear she was ready !
As the door opened to wheel Erica in, the additional presence of five or six solemn-looking people was not even registered by Penny, who was overjoyed to have Erica returned to her side. For me, the solemn-looking people meant it was a “yes”, so now I should listen to what comes next. After they all left the room, I cried like I had never cried before, but these were not tears of sadness or disappointment, I believe they were my way of saying goodbye to what I had thought our new life was going to be. We all have hopes and dreams (however idealistic) of what the future may hold for our children and that was not the way it would be now. However, as Penny handed me my new daughter for a cuddle, we were clear we were blessed and this was only the beginning of a new and different adventure.
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One of the doctors who came that morning had handed us a leaflet. It was for a local group which was started by some mothers who all had babies with Down Syndrome at a similar time. It was called PSDS. I had a look at their website and when we got home we discussed if we would contact them. The discussion lasted about eight seconds as we both thought it was a good idea and Penny called the number one day when I had gone back to work. She said she’d had a lovely conversation and had been invited to a coffee morning with some other mothers. Within a few months we had been to our first Saturday morning family meetings at Lloyd Hall and were delighted to have a new circle of friends and a way to learn more about Down Syndrome and how we could focus on ways to assist Erica’s development and enjoyment as she grew.
Fast forward again, to 2015. Erica is enjoying school, she has a younger brother and Penny and I are overjoyed as PSDS goes from strength to strength into its 10th year…which leads me to my current challenge….remember I like a challenge !
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Having failed to get through the London Marathon ballot for the last few years, when I heard that PSDS had won a charity place and was offering members the chance to put themselves or friends connected to them forward to take part, I eagerly put my name in the hat. On hearing that my name had been pulled out of that hat, I was honoured and excited to get going.
PSDS have done so much for us as parents and Erica as, first a baby and now a growing girl that I feel a duty to do this to help continue the great work and services available to the member families and as a massive thank you to the Trustees, Digbies staff, background admin team and committees who keep PSDS going every week.
With just over three months until the big day, I am passed half distance in my training and feeling positive about the event and raising lots for PSDS. I usually train three times a week and that involves about 10 to 15 miles one week and then 10 to 20 miles the next. Last year my total “mileage” was 324 miles, but 104 miles of that have been logged since November ! If I can’t get my mid-week runs in during my lunchtime I’ll get them in during the evening.
Despite the cold and wet weather, as I walk out of my front door and walk down the road before trotting off, I like to think about life the universe and everything, but as the miles pass by, however wet I am, a significant portion of my thoughts are about family and what the future holds. With PSDS going from strength to strength that future can be more exciting.
If you’d like to sponsor me, please go to https://www.justgiving.com/SimonRance01/ and PSDS can claim back gift aid on your donation too. Many thanks ! Simon.
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He is Joe. He is our son.

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This month Emily talks openly about her experiences when she and her husband Martin, found out their unborn son Joe, soon to turn one (Happy Birthday gorgeous Joe), not only had Down Syndrome but also two heart conditions.

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When Sarah asked me if I would consider writing something for the PSDS blog I knew straight away that I would say yes. I realised that I’d reached something of a milestone by coming through the trauma and stress of the early months and that I was not only ready to share our story but desperate to! I often wish I could go back in time and tell my pregnant self what I know now.

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Last year my husband Martin and I welcomed our baby boy Joseph into the world. We will celebrate his first birthday on the 11th December and I can’t quite believe he will be a year old. He is sitting on his play mat next to me now giggling, babbling to himself and sucking his thumb. He’s everything we could have ever wanted when we decided to start a family. This inquisitive, playful, raspberry blowing little person is a loving son, grandson, nephew and cousin. He is a hugely valued and much loved member of our family and he just happens to have Down syndrome.

Does it matter that he has Down syndrome?

It seemed to matter at our first scan. It felt like our world was falling apart when we were told there was a one in eight chance of our baby having Down syndrome. (The wording the sonographer used was different, which I feel strongly about and will explain more about that later.) Feeling traumatised and terrified, we made the difficult decision to have CVS, an invasive procedure which gives a definitive diagnosis but carries a risk of miscarriage. We couldn’t cope with six months of uncertainty and knew we would cling to the hope that our baby would be absolutely fine and then if our baby did have Down syndrome we would go through this trauma again at the birth. I took a phone call a few weeks later outside the office at work and the screening midwife confirmed that our baby had Down syndrome.

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The most popular conversation starter of choice over the next few weeks was ‘are you continuing with the pregnancy?’ I was asked this question on a number of occasions by doctors, nurses and midwives. So it obviously mattered to them because the insinuation was that I should be considering my “options”. This indirect message from the medical community sent us into a complete panic. We were beside ourselves with fear and worry about what the future would hold for us, as parents of a child with Down syndrome and what sort of life our child would have. We were in such a muddle that even though I knew the answer to the question I did check with Martin that he felt the same way. I cried and cried when he agreed that of course we were continuing with our pregnancy. I felt so guilty that we were questioning the value of the life of our baby because of a silly screening process that I had agreed to without giving it much serious thought at all.

We found out that we were expecting a boy, one perk of such extensive genetic testing, and that meant we could start discussing names which really gave us something positive to focus on.

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We didn’t have much time to get to grips with our baby’s Down syndrome diagnosis before we had our next shock. At sixteen weeks a specialist fetal heart scan highlighted that our baby had two heart conditions, coarctation of the aorta and complete atrioventricular septal defect (AVSD). A consultant cardiologist calmly explained to us that our baby would need to have surgery within the first few days of life to correct the coarctation of the aorta and further surgery at six to nine months of age to repair the complete AVSD. She drew a picture of a typical heart and then a picture of our baby’s heart to help us understand the baby’s heart conditions. It was surreal. I felt silly for worrying about what a diagnosis of Down syndrome meant for our child because congenital heart disease was a lot more frightening and surviving that was what really mattered.

I am relieved and enormously proud to say that thanks to the cardiac team at the Royal Brompton, Joe can look forward to a healthy future like any other baby. He had two major heart surgeries, the first at seven days old and the second at six months old. I made a video for our friends and family once Joe had had his second surgery. If you want to know more about Joe’s heart journey you can watch it on

http://Youtube.https://youtu.be/FLl5JAtWCnM

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When Joe was around five months old we got in touch with PSDS. We took him to the PSDS fun day. We wandered round the stalls, introduced ourselves to parents and met their children. Everyone was so friendly and it struck us both that there were just so many people of all ages having a great time. Dads were getting competitive on the welly wanging, children were bouncing around on the bouncy castle and everyone loved the animals! We bought tickets for tombolas, raffles and the barrow of booze and we had a brilliant time. We even won a bottle of champagne! After all the time in hospital and the stress of Joe’s diagnosis we realised we could get on with our lives now. All the people at the fun day were. Nobody looked unhappy or feeling sorry for themselves, far from it.

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Martin and I chatted to other parents and we talked about all sorts of things. That might sound silly but to me it was what I really valued about meeting up with the group of parents from PSDS. We don’t sit and talk about Down syndrome all the time! It dawned on Martin and I that we could have got in touch with PSDS earlier. We didn’t realise that the families from PSDS were the best possible people for us to be around. As well as having some shared experiences, families of people with Down syndrome know more than anyone else, that every person is unique and that Down syndrome is nowhere near as scary as the medical profession will have you believe.

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The language used to talk about Down syndrome pre natally can be very intimidating. They talk about the “risk” of your baby having Down syndrome as though you are somehow risking your future happiness.

Once there is a chance your baby has Down syndrome you are sent for “fetal anomaly scans”. I remember crying because I didn’t want my baby to be referred to as an anomaly.

They use language like “not compatible with life” to talk about other syndromes screened for during the screening process. Why should any mother ever have to hear that phrase?

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Where is the support for parents continuing with their pregnancy? It certainly wasn’t in the room with the glum paediatrician who listed every possible health issue a person with Down syndrome may have and managed to last the whole appointment without smiling. I suspect he hadn’t spent any time at all with anyone with Down syndrome.

The support parents really need is with organisations and charities like PSDS. That’s where you’ll find people who really know what they are talking about and who can give you a balanced view.

So, does it matter to us anymore that Joe has Down syndrome? No. It doesn’t. He is Joe. He is our son.

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Joe has already had more than his fair share of challenges and I’m sure he will have more in the future but he has us to face those challenges with him. With our love and fierce determination for him to reach his full potential, we will embrace life and all it throws at us as a family. We have had tough times, there is no denying that, but we have become closer as a family, we have a fresh perspective on life in general and we have found ourselves part of a caring and friendly community. What more could we want?

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This is… Thea

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This month Helen, one of the trustees of PSDS writes about her experiences. Helen lives in Dorking with her husband Andrew and their two beautiful girls, Rowan and Thea.

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When Thea bounced in to our lives in 2005, her diagnosis of Down syndrome the next day was a shock to say the least. We’d had no indications during pregnancy, or during her birth. The junior paediatrician who came along to the ward 24 hours later however spotted a few signs (“indications” I think she called them!) that concerned her and very shortly the words Down syndrome had entered our vocabulary! Blood test results a few days afterwards confirmed that Thea did have trisomy 21.
The first days, weeks, actually months if I’m honest, were an emotional rollercoaster. We were as in love with this new little bundle as we had been two years earlier when her big sister was born – but this time round there was another emotion too – for me at least, Andrew seemed to take it all in his stride much better than I did. Grief is probably the closest description for what I felt then.

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We’d planned to have two children to make our little family complete. We hadn’t planned on the presence of an extra chromosome……

Neither Andrew or I had any direct experience of what a diagnosis of Down syndrome might mean for Thea, or for us all as a family. But we both had pretty outdated views of what we thought this unwanted label, that had somehow been attached to our baby, would mean.

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Hence sadness, shock and grief mixed with an overwhelming sense of love and protection creating a heady cocktail of emotions in those early days.

I can’t remember exactly when it happened, but bit by bit I began to feel guilty too – not guilt that somehow I/we had caused Thea to have an extra chromosome (I knew it was just a random chance, nothing we had done), but the heavy weight of guilt that came from feeling sad when I had this beautiful new baby in my arms. Guilt that my reaction – which was initially far from positive or optimistic – would somehow rub off on Thea and “make things worse” for her.

That might have been the first turning point….Again, I can’t remember exactly when, but it was definitely during the early months, that I made a teary promise to Thea that I wouldn’t have low expectations of what she might achieve. That I wouldn’t let the way I was feeling then limit Thea’s chances to reach her full potential. That I would try to focus more on what she could/would do rather than on what I feared she might not.

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One thing I do remember, vividly – it was such a life-line to me at the time – was a booklet I had been sent by the Downs Syndrome Association. It was called JustKids and it had been put together by a parent-led support group. Inside the booklet were typical family photos of children with Down syndrome along with a little caption (the child’s name and things they did/didn’t like) – the point being to show that children with an extra chromosome are just kids, just doing what other kids do. There were children on bikes, photos of kids in their school uniform, on holiday, going to Brownies, swinging on a swing, walking the dog, playing in the park, blowing out candles on their cake…just kids being kids.

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That little booklet was, at the time, the most positive and uplifting piece of information I had come across – and yes I had spent hours searching search engines for images, stories, hope…. JustKids really did help me to see Thea first and foremost as an individual unique child, a beautiful baby, who would grow and do lots of things that other children do.
Fast forward 10 years – the time has flown by and we have seen Thea grow in to a wonderful child with bags of potential, personality and perseverance. I would be lying if I said that the past 10 years have been easy – at times they have, at other times not. But here we are today – all still surviving and in many ways thriving.

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Throughout the past 10 years, I have often thought about the JustKids booklet and how much it helped me. So, when we were talking about PSDS turning 10 (the charity that we helped to set up with some other fabulous families that we’d met a few months in to our individual, but shared, journeys!), it seemed like the perfect opportunity to try to create something of our own that might also help to inspire, comfort and reassure new families receiving the same news that we had all received.

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And so “This Is Me” began to take shape. A project that will include an exhibition of 50 awesome portraits of children with Down syndrome, a gorgeous short film and some fabulous printed materials too – a bit like JustKids but with a spin of our own!

I can honestly say that working on “This Is Me” and in particular helping out at the photo shoot for the 50 children taking part has been one of the best experiences of my life. I can’t wait to see the exhibition when it is launched on 21st March 2016 (World Down Syndrome Day – of course!) and I’m dying to see the final cut of our little film too.

I hope that “This Is Me” will help others to look beyond outdated labels and see our children for who they really are – and not “what” they are. To see that our children are just children – beautiful individuals with tons of personality and talent.

No two people are the same – with or without that extra chromosome – but we do all have one thing in common….. We are all unique! And that’s definitely something worth celebrating.

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