Friday, 23 September 2016

Boo's story


“You told me of darkness where there is so much light.

You told me of sadness and there is so much joy.”



Stories. Everybody has a story. Some chapters are interesting, exciting; other chapters average, mundane, the daily grind. Sometimes we’re told a story by people we trust about what our lives will be like, or what someone else’s life will be like, only to find out that the reality is so very different.


Every so often you read or hear a story which just seems to thump you in the chest. It’s so powerful, it thumps so hard it stops you in your tracks and you feel your eyes begin to flood. That’s the story you’ll read today. It’s not my story; this story belongs to Boo Lowe, and I’m so grateful to Boo for sharing it with us.


“Thank you Sally Phillips for encouraging me speak out...


This is my story ...


To say I was thrilled to find out I was pregnant is an understatement of colossal proportion! I was 44 years old, in my second marriage with two teenage children from my first and had longed for this baby for a long time. As a family, we were all very excited about the new journey we were on. We couldn’t wait to welcome this new life into our world and share new adventures with a new little person.


From the onset of the pregnancy, pretty much, I was sick daily. This was new for me and I remember saying how this felt different to my last two. I took it as a good sign that my hormones were high and even considered that I might be expecting twins or more!



At 12 weeks I was called for my first scan – the energy in the room shifted as the radiographer spent longer than normal without speaking and measuring the area at the back of the baby’s neck.



I was so happy to see my little one...


a little flickering heart...


 
moving...



wriggling...


 
kicking...



...it took me longer than it should to pick up on the vibes.


We were told that the nuchal fold measurement was bigger than normal – 5.8 instead of below 2. Not knowing what that meant or might indicate, we asked all the questions we could think of.


Genetic disorder was the answer to all. Further testing, how old was I? Have a cup of tea, someone will see you in the other room, do you want the scan pictures? No, it’s ok; you don’t need to pay for them this time…we were given literature on amniocentesis and C.V.S. tests to determine what genetic disorder our baby may have. We were told that although Down syndrome, T21, was the most probable, the high nuchal fold measurement could also be an indication of Edwards syndrome, T18, or Patau syndrome, T13. I asked if there were any other indications that something was wrong with our baby and no there wasn’t but we should really find out soon so we could decide the best course of action.


We drove home in silence, the first time of many journeys to come where we could find no words.

I spent more hours than I can remember googling all the ‘syndromes’ possible and the tests they had advised. I was in a fog but clung on to my little belly and prayed hard that my confusion and worry wasn’t somehow passing through my veins and into this little life.



“I was sinking at a time when I wanted to fly”


The first phone call came the next day…we were invited to meet with a lady who would explain everything to us about testing, the possible results and what we could do about it. The meeting was horrific to me. I remember her describing all the negative issues associated with genetic disorders. T13 and T18 not being life viable and T21 having multiple life threatening, life shortening or life compromising issues that basically added up to it not being wise to continue with the pregnancy. We were told in incredible detail about how the baby would be removed from me. How a regular D & C was not possible after 12 weeks and what the procedure would be. I felt even more sick than usual and numb to all the information that I didn’t want or ask for. Such a dark picture was emerging in front of me. I was sinking at a time when I wanted to fly.


We discussed everything with the children and decided together that I would have the C.V.S. test so that we knew for sure which path we were on. Before I had a chance to let them know of our decision another phone call with a sympathetic voice urging me to not delay in moving forward with this, the sooner the better. I was in my bedroom on the morning of the day after the test when the phone rang again, it was the doctor who carried out the procedure, and she wanted to tell me the news herself, “I’m sorry but the test is positive, Trisomy 21, Down syndrome.”



Long silence. I asked if she could tell me the sex of my baby, yes she could, it’s a girl. Thank you, I said. She told me I would be contacted soon to discuss everything properly but she would tell them to give me time to let the news sink in. I remember, my first reaction was relief that it was Down syndrome and not any other genetic disorder they had described with even darker prognoses.


I sat on my bed and said out loud, “a girl” …then the tears. Of course there were tears, I mourned in all the ways we do when we mourn, with anger, confusion, desperation, the loss of the healthy baby we were supposed to have. I wanted it to be wrong but I also wanted my baby to know that I LOVED her so very much. I felt guilty, so so guilty that I had done this to her, it was my fault. But, with all of it I still felt an incredible bond to my baby girl. I apologized to her over and over, angry at myself for being sad and promising her that it would be ok.



Again we talked as a family and it was the strength of the children that cemented our final decision that same day. When we discussed termination with them they were 100%, absolutely, no way, not on their watch, adamant that that was not an option and I was so relieved and proud of them. This was their sister and that was that.
I want to say that in no way ever would I judge anyone’s choice in similar situations. It is not and will never be my place to pass my opinions onto others but this was our decision, our life choice together.




We were given the option again to terminate and told that it was relatively simple.


It was the next day when we were called again. I told the person on the end of the phone that we had made the decision to continue with the pregnancy and I was asked if it would be ok to meet up so we could properly discuss everything. There we were told of the many medical issues Down syndrome can be associated with. Heart abnormalities, respiratory issues, increased chance of childhood leukemia, early onset dementia, hearing problems, vision problems… do we really want to have to face all of this? We were given the option again to terminate and told that it was relatively simple. Again we said that it was not our choice to do that. More scans were booked in including special heart scans and each one showed no abnormalities but the calls kept coming.


Altogether, from 13 weeks to 24 weeks I received nine phone calls, each one gently and not so gently urging me to look at the medical facts and perhaps think again about our decision. I was told about how the quality of life of my daughter would be not good; she would be a burden on the family, my other children. She may not be able to walk or talk, she may be deaf, blind, have thyroid issues.



It was a battle to fight off the negativity and a fight I am so glad I won. I feel so sorry for other mothers that are maybe not able to see through the darkness to where I am now.


My daughter is four years old, she does have an issue with her heart but no surgery is scheduled. She started at mainstream primary school last week. This morning when I dropped her off a little girl in her class came up to me and told me how she had been hugged lots in the playground yesterday by my daughter. I smiled and she said to me ‘I love her already and we only just met’.


Please, medical professionals, I beg you, understand that Down syndrome is not just what you see. You told me of darkness where there is so much light. You told me of sadness and there is so much joy. My daughter is a worthwhile member of society and already in her four years has changed the lives of everyone who knows her and is capable of so much more than you let me know. I managed to shake of your negativity and look towards a positive future with my daughter forcefully guiding the way.




Thursday, 15 September 2016

Don't screen us out

Guest post: Lynn Murray

As a special, and long overdue, treat for my regular reader (don't say I don't spoil you), I’ve asked my friend Lynn Murray to write a guest post. I’m not going to introduce it further as I don’t want to detract from Lynn’s excellent words.

Lynn is UK Spokesperson for Saving Down syndrome and Don’t Screen Us Out (DSUO). DSUO was launched in January following the announcement that the UK National Screening Committee recommended that the NHS roll-out Non-Invasive Prenatal Testing (NIPT) despite concerns raised by Saving Down Syndrome and others in the public consultation about NIPT. 

@dontscreenusout on Facebook and Twitter
@savingdowns on Facebook, @savingdowns1 on Twitter

Thanks for reading,
Paul


If people get a glimpse of what may happen in the future, what effect does it have?  Does it scare them or help them prepare?  Or do they see chaos and look for ways to avoid their fate? 


I considered all this again, after reading Dr. Kelly Cohen's item in the Huffington Post about the about much-heralded new NIPT, an acronym, of course, meaning Non-Invasive Prenatal Test, and, somewhat of a misnomer.  This was an article about the brave new world, the one, where it appears, we can find out much-wanted information about our unborn children, gently ushered through a screening system without any real inconvenience. The Government have even played their part with the advertising of these tests, one Minister being heard to say in Parliament that these tests have “potential to transform antenatal care”.

Really?  

You see I'm one of the ‘Down’s syndrome campaigners’ Dr Cohen mentioned in her article, who has had to graft somewhat this year, fighting against a well-funded, increasingly popular, idea that we should usher in, the non-invasive world of antenatal testing, post-haste, unquestioningly.  What can go wrong, after all?  Aagh!  The future!  We’ve seen the apocalyptical films and read the books.  We know how this might end.

The promise of a pain-free antenatal screening experience may mean that many more women will take-up these new tests in anticipation of the brave new scientific world, in the hope of walking away in the certainty that they're not going to have a baby with Down’s syndrome after simply offering an outstretched arm for a quick ‘jab’.  In actual fact these new tests will only tell them that they 'probably' aren’t going to have a baby with Down’s syndrome, because the new screen, as I pointed out, is not perfect, it will still have false positive results, false negative results, and failed screens, in the latter situation, previous screening methods may have to be resorted to in order to provide some sort of probability.

"screening often raises needless anxiety, a low probability result abates that anxiety"

If all goes to pharmaceutical plan, more women will choose to have antenatal screening; however, as you may already know, the vast majority of women won't be found to be carrying a baby with Down’s syndrome, and they never were. The Down’s syndrome lottery has few winners.  The new NIPT screening blood test, heralded as an ‘improvement’, which could 'transform' has somewhat of a placebo effect, screening often raises needless anxiety, a low probability result abates that anxiety.  Of those who are found to have a high probability result, they will still need to have an invasive test if they want to know definitively that their baby has Down’s syndrome.  

Do you see why I call it a misnomer?  The Huffington Post article tells us that post-diagnosis parents will be 'supported throughout this time’ by the prenatal system.  Please note that Dr. Cohen never mentioned that parents will be provided with information about Down’s syndrome or counselled through the time of adjustment (great or short, depending on your perceptions of the syndrome).  No - she didn’t, and, in fact, these are some of the issues still not addressed with the advent of NIPT, even though there is now a well-developed disability rights framework in this country.

I understand that receiving a diagnosis is an experience which can be emotionally painful and difficult, but, if you stick with it, and find acceptance, you will ultimately be led towards a most rewarding experience.  This is where the campaigners come in; this is why we've taken to the streets this year. We've, most of us, actually been there, done that, had a diagnosis, unfortunately, for many, what they have found is that being 'supported' has not been as liberating as it might have been if only those delivering the news were more aware of what it can mean to live with Down’s syndrome today or have been able to put themselves in our shoes for a time.

Dr Cohen said in her article that many women choose to continue with pregnancy following a diagnosis, and that is simply, not true. Following a diagnosis that a baby has Down’s syndrome, most women choose not to continue with their pregnancy, over 90%, in fact. That's a frightening statistic considering that we claim to be a diverse society.  So, she is correct, in that, there may not be a rise in terminations, as 9 out of 10 is already an exceptionally high and questionable figure following diagnosis!  Dr Cohen has also said that NIPT will provide a ‘positive’ and that, also isn’t true, as I said earlier, these screening tests provide likelihood not diagnosis.  So, by all means, listen to what proponents of these tests have to say, and then read everything you can on the matter.

"Down’s syndrome campaigners simply want a world where people are accessing a prenatal system fit for purpose"

It does appear that something is wrong with the screening system but not because, as Dr Cohen, may have suggested that it carries ‘a lot of emotion’ for 'Down’s syndrome campaigners'.  No, au contraire, Down’s syndrome campaigners simply want a world where people are accessing a prenatal system fit for purpose - we’re pragmatists.  

So please, dear readers, discern well, don’t just believe the hype, do your research around Down’s syndrome (if you’re not already living with it) and find out about the support you would expect if the unexpected did happen.  Do you have any misconceptions about what life is like with a baby? Yes, that's right, any baby, because, that baby is very unlikely to meet all your aspirations, it’s best to get real about things now. Being so adjusted may mean that you can accept and enjoy the mess and diversity of life, and, if you are one of the rare winners of the Down’s syndrome lottery, you might get the chance to reap the rewards that are brandished on the hundreds of Facebook pages of those parent campaigners, the pages filled with pictures of children with the extra chromosome and the posts too, declaring the love and joy that families have found down that unexpected road.  These are the people who accepted the future, which is messy, but it is bright. 


Lynn (centre) campaigning at Parliament earlier this year with her daughter Rachel (right) and friend Catherine.

Lynn campaigning alongside David Elliott


Monday, 12 September 2016

Binoculars

I have a beautiful granddaughter, M. I’m sorry to have to tell other grandparents that despite how gorgeous your grandkids are, mine are the cutest and most gorgeous. M is just perfect in every way; an enchanting smile and giggle, the longest eye lashes you’ve seen in your life and a twinkle in her eye that tells me she’s got a wicked sense of humour and she’s gonna torment her grandad for years to come…and I can’t wait!


Of course you may see things differently. Whilst obviously wrong J, you may think that your children or grandchildren are the cutest.

You won’t know about M if you’ve never met her. I can tell you about her but until you meet her you won’t know her. And vice versa. Your little darling may win awards for cute but my experience of him/her will never be the same if I never meet them.

I was with M the other day, she’s nearly two, an inquisitive age; the adventure of life is just starting for her. She’s exploring, seeking out hidden things, she’s realised that if you open your eyes, move around, lift closed lids, turn some pages and pull tantalisingly close handles there are untold treasures to be discovered. Sometimes it’s a good surprise, sometimes it’s not. Life is all about learning when you’re nearly two. I was taking photographs of M and her new baby brother and she was busying herself and entertaining us as she did so. She spied my camera bag and went to investigate. Lifting the lid she found an empty space where my camera goes but next to it she saw something she’d not seen before – binoculars.

It’s interesting when you stand back and watch, this little girl knew instinctively what to do. She put the binoculars up towards her eyes and when I moved towards her she giggled and pulled them away. We repeated this until what seemed like a week later, she never got bored of the game and I never got bored of hearing her giggle. Beautiful.

The funny thing was, she had the binoculars the wrong way round; she was seeing things in a completely different way to the way they were manufactured to be used. But they brought joy to M anyway. Why? Because she had no preconceived ideas about what they were or what they were for. She just accepted them for what they were and they made her giggle.

Wow!

I had witnessed with my own eyes the glorious beauty of humanity wrapped up in the giggle of a 23 month old infant.

I’ve actually got goosebumps as I sit at my keyboard typing this.

M discovered what so-called wise men, philosophers and ethicists have long since forgotten – to appreciate and accept at face value the simple pleasures life brings if only you are prepared to lift the lid, turn the corner or look through the wrong lens.

I see this simple humanity in Emily; in both the way she looks at the world and the way that she makes me look at the world. It’s as though the world view of Down’s syndrome is that it is foolish to bring someone with Down’s syndrome into the world; philosophers and perceived wisdom would have us believe that we are somehow diluting humanity by allowing those with learning disability to be born. How else would we end up with 90% of babies with Down’s syndrome being aborted? Some of them between 24 and 40 weeks.

But I’ve seen what they don’t see, that it’s the foolish things of the world that shame the wise. Have you seen that?

“But what about the future of the human race?” asks the geneticist determined to do all he can to bring eugenics in through the back door just to prove what a great scientist he is. “If the human race is to stay strong we need to get rid of the weak.”

But I’ve seen what the scientist and the ethicist and their friends don’t see; that the weak things of the world shame the strong. Have you seen that too?

I would go so far as to say that for the survival of humanity we need those that appear to be weak and vulnerable more than they need us in fact. They are indispensable to the survival of humanity as we know it. Seriously do you want to live in a world where everything goes to plan, where we laugh when we’re told to, when live like robots in some kind of Stepford hell?

Or do you want the joy of a giggle from looking own the wrong end of the binoculars?

Do you want your heart to burst with pride because your son has kicked a ball for the first time when everyone said he’d never be able to do it?
Do you want to be stopped dead in your tracks when your daughter tells you with all sincerity and earnestness that you are the best dad in the world and that she loves you 100%.

Yes there are struggles and challenges but that, my friends, is called being a parent. We get no guarantees as to what our children will be capable of doing, both good and not so good, whether they have a disability or not. They will each draw a tear and a smile.

Emily makes me see life differently. As we drove home last night she said, “Look at the sunset, it’s glorious and victorious!” How else could you describe it for goodness sake! I’m happy to look at life through the wrong end of the binoculars just like M, because I get to see life another way. I rejoice because I get to see what so many don’t; the foolish things in the world’s eyes shaming the wise; the weak things in the world’s eyes shaming the strong.


If you know someone with Down’s syndrome, if you’re glad they’re alive, glad they’re in your life, glad that they choose to love you unconditionally, glad that you get to see through the wrong end of the binoculars would you tell them today just how much they mean to you, maybe write it down and pin it in their room so they see it every day. Tell them and then do something to tell the world. Write to your local newspaper or radio station or something else even more creative. If we do nothing I’m afraid we’ll see fewer people with Down’s syndrome in future and that will be no good for anyone. We owe it to those still to come.



Monday, 5 September 2016

i-SPY with my little eye

I spy with my little eye something beginning with …………H


Hat?

No

Hill?

No

Hem?

No

Hook?

No

Erm….Hungary?

Now you’re being ridiculous. Give in?

Yes. Give in. What is it?

Horizon!

I-SPY - it’s one of those really annoying games where somebody always finds something to see that you don’t. This is actually a shortened, recollection of a game of I-SPY which I was playing with my family when Noah was just a boy. I remember my brothers were not that enthralled with me for coming up with that one but my mum can still remember that one to this day so I must have done something right. I had realised that you can always see a horizon but that it changes depending upon the length and direction of the journey.

Ever since Emily was born I’ve been playing I-SPY with somebody of other. Twenty four years later I’m still playing I-SPY.

I-SPY with my little eye something beginning with P

Potential!

My turn again. I-SPY with my little eye something beginning with P again.

Possibility.

I-SPY with my little eye something beginning with S and before you say it, it’s not SEN, SEND, Special, Syndrome or even Supercalafragalisticexpealidocious!!!

No this S is for Stress.

Stress. I see that. Do you see that? All too often I reckon. On the care-worn faces of loving, hard-working, dedicated parents who are trying so hard to get someone else to see that which begins with P.

Last one – I-SPY with my little eye something beginning with N.

Give in?

It’s N for Neck. The neck of those people in authority with their heads stuck in the sand and their backsides stuck up in the air. We all know who these people are. They’re doing different jobs in every town but they’re always there. Somewhere. Maybe lurking in a school or college, perhaps they’re shuffling their way through a local authority “career”, they might be dressed as a HealthCare Professional. Maybe they’re in your own family. You know them. Of course they deny it to your face but secretly they are in denial about their own feelings towards people with Down’s syndrome. Denial about what people with Down’s syndrome can achieve.

You may have seen Sunday Morning Live a couple of weeks ago where there was a discussion about the new NIPT test for Down’s syndrome and the ethical debate that goes with it. Rabbi Dr Jonathan Romain of the Maidenhead Synagogue offered a very outdated, stereotypical view of Down’s syndrome, no doubt formed many years ago but despite many letters and emails of complaint, he refuses to enter into a reasonable conversation about this matter and has offered so far only a standard response to everyone.

I see his neck.

What Dr Romain and [insert your own local ostrich here] haven’t realised is that the journey for people with Down’s syndrome is a developing one. It’s a progressive one. It’s a journey of possibility and potential. We have no idea what people with Down’s syndrome are actually capable of because we have failed to put the support in place to allow them to thrive. The survival mentality causes untold stress for so many and that must change. Without such change we are in the dark ages.


Yes, we are on a journey and we are still moving forward; and as we do so, the horizon is constant yet ever changing.