My Response To The Daily Mail, October 2014

As you may know, October is Down’s syndrome awareness month. There are a lot of lovely people sending out fantastically positive articles, photos, Facebook statuses, tweets, media stories and so on, in order to raise awareness of the condition. However, there is a lot of negativity too – articles, stories, tweets etc about people with Down’s syndrome. People with the condition are often the ‘butt’ of people’s jokes and internet memes. One story was so ludicrous last week that I actually found it hilarious (you may well disagree) – it was so offensive and off the wall that I can only hope that no-one believes it! Articles like this are often not worth commenting on or getting worked up about. (Here’s the link: http://www.pyroenergen.com/articles07/downs-syndrome.htm)

Occasionally though, I read something that profoundly affects me. That hurts my heart. That needs a response. An article in the Daily Mail came to my attention featuring a mum who chose to abort her baby, Oscar, because he had Down’s syndrome. She claims it was the kindest thing to do for him. I thought of Asa and how different our life would be without him in our life. I posted my thoughts on Facebook and a friend suggested I write to the Daily Mail.

Here is what I wrote:

I’m so saddened by this article in the Daily Mail: ‘Aborting my baby Oscar was the kindest thing to do for him’. http://www.dailymail.co.uk/femail/article-2787202/Aborting-baby-Oscar-kindest-thing-I-Woman-agonising-decision-end-child-s-life-discovering-Down-s-syndrome.html

I read this article and cried. My husband and I have two children, Emelia aged 4, and Asa our son aged 2. Asa was born with Down’s syndrome in 2012 & he’s 2 years old. Let me explain why I shed so many tears reading about Oscar’s life that was cut short.

I could actually empathise with the mum, Suzanne, because Asa too, like Oscar, had a lot of fluid on the neck at our 12 week scan. We were then ushered in to that small side room of ‘bad news’… We were referred to the Fetal Medicine Unit at the University Hospital of Wales, Cardiff the following week. There we were told Asa would have a 1 in 2 chance – 50% – of having a chromosome abnormality, the most common being Down’s syndrome. Our baby also had a 10% chance of a heart problem with no chromosome abnormality, & a 15% chance of the pregnancy ending in a miscarriage with 25% chance of no medical or health problems. Initially, embarrassing to admit, it’s safe to say Jon & I were gutted to receive this news – we feared our son wouldn’t survive but we also feared he would have Down’s syndrome. This was mainly down to our own ignorance and fear of Down’s syndrome as we knew very little about the condition. We chose to continue the pregnancy without any further diagnostic tests, simply because Asa was our child. The diagnostic tests carry a very small chance of miscarriage – about 1% of pregnancies will end as a result of these tests. As Christians, we didn’t want to take that chance because life is precious. If tests diagnosed the Down’s syndrome then we would not have terminated our baby’s life. If he had Down’s syndrome, we’d research it and we’d cope. I had regular scans throughout the pregnancy to monitor the baby. Asa did seem to have a small heart problem and we saw a fetal heart specialist for detailed scans and he would be scanned after birth. When he was born and the doctors asked to speak with us, we knew then he had DS. The thought of terminating his life sickens me to my stomach. Ok DS isn’t what we would have chosen for him, but it’s certainly not a reason worthy of ending his life. What really is shocking and heartbreaking is thinking back to being told we could still have a termination if we changed our mind, even up to 32 weeks in the pregnancy, EVEN WITHOUT A DIAGNOSIS! …Because the LAW says that is ok… This is the ‘Category E’ section of abortion law. The law also states that a baby with a ‘significant disability’ & confirmed diagnosis can be ‘terminated’ right up to point of birth (I would strongly disagree that DS is a significant disability – the law here is extremely grey and needs challenging), and if that precious little life is born with difficulty breathing or not breathing, doctors do not have to resuscitate that baby’s life. When Asa was born, he had problems breathing and needed the CPAP machine. The doctors saved his life… So to think that a baby could be left to die in this painful inhumane way absolutely breaks my heart. The law is in desperate need of a review of ‘category E’ abortions.

As a Christian, I am pro life. However I wouldn’t judge any parents facing this situation. What I would like to see is more up to date and relevant information and support being given to parents receiving this kind of news. The medical profession, generally speaking, seems to be biased in favour of terminating the lives of children like Asa. This is so wrong. Parents can ultimately do what they feel is best (and let God judge, not us); but if they are choosing to end a baby’s life simply because they fear DS, or have the wrong, out dated information, or out of ignorance, then that cannot be condoned. But if they choose to terminate even after correct, up to date, support and information then obviously that is their choice.

Having a baby with Down’s syndrome isn’t the end of the world. In fact, it’s the start of a new one. All babies deserve a loving home, someone to believe in them and be a voice for them, whether or not they have Down’s syndrome.

This is why I share a lot of our life with Asa (and Emelia of course). We’re just an ordinary family, getting on with life. We have ups and downs (pun!) just like the next person. The hardest part of our life with Asa so far has been his wretched Reflux. Dealing with that on a daily basis is challenging!!!! He has a hearing loss because of glue ear, but many kids without DS have that! He may need glasses in a few months, but again, many children without DS need glasses. Do you see where I am going with this?! You wouldn’t terminate a baby just because they have a slight hearing loss or poor eyes, would you? Thankfully after birth, a heart scan revealed that the heart problem resolved itself and we were discharged from the neonatal cardiologist. We know that many babies have a range of heart problems which can be serious and worrying for parents. We had worried when it was a ‘minor’ problem so we can empathise with other parents. Babies born with heart problems now have access to some of the world’s top heart surgeons. Miracles are seen regularly in paediatric heart surgery. We are fortunate to live in the UK where we have the NHS and complicated life saving operations occur daily. Little Oscar only apparently had 1% of survival… I’m sure that must have devastating news for any parent. But it’s still a chance at life. A chance for a highly skilled heart surgeon to operate. A chance that he would have pulled through and now be running around playing with his older sister and younger brother. A chance to love and be loved every single day.

Asa is very much like his sister. Our life is a bit different to when Emelia was little. We now have hospital checkups for ears (hearing) & eyes, and appointments for physiotherapy, occupational therapy, speech therapy, communication and language development groups, a portage worker (child development service). These things can sometimes be a minor inconvenience but all in all are there to help Asa develop to his full potential and to support him as he grows up.

Asa is loved, happy, grumpy at times, sociable, cheeky, blows raspberries, modelled for clothing company Boden, annoys his sister by pulling hair, pulls my glasses off, empties the toy box, empties the nappy change box, puts the remote control under the settee, has Reflux, gives me kisses by gently licking my face – and he makes me laugh and makes us proud every day! He’s just Asa. Our son. A brother. A grandson. A cousin. A nephew. A great nephew. Precious. Adored. A child of God. WANTED.

October is Down’s syndrome awareness month. I hope this response helps in some way to raise awareness about it. Thank you for reading.

Lizz Shaw.

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If you would like to read more about the Disability Abortion Law, Hayley at Down’s Side Up has spoken in a Parliamentary debate and written about it here: http://www.downssideup.com/2013/02/evidence-by-downs-side-up-in.html

One Year On: Gross Motor Skills Update

So much has happened since I re-started this blog. Today I will give an update on Asa’s physical development (gross motor skills) since last summer. October is Down’s syndrome awareness month so let me explain why Jon and I celebrate every seemingly small milestone Asa reaches. People with Down’s syndrome often have low muscle tone (hypotonia) and loose joints (hypermobility), particularly in babies and children, which makes gross motor skills like sitting, crawling, kneeling, standing and walking much harder for them to achieve.

In October 2013, I came across kinesio taping on a Down’s syndrome blog. I had not heard of this before. Here’s a definition: “The Kinesio Taping Method is designed to facilitate the body’s natural healing process while allowing support and stability to muscles and joints without restricting the body’s range of motion. It is used to successfully treat a variety of orthopaedic, neuromuscular, neurological and medical conditions.” (Taken from this site: http://www.kinesiotaping.com/about)

Kinesio taping is fairly common in America but no so much here in the UK. I located a practitioner in Cardiff who was able to tape Asa’s core muscles and show me how to do it at home. Unfortunately, taping infants is still very new to the UK and I could not find an NHS practitioner in our area.

Within a month of Asa being taped five days a week, in November 2013, Asa started being able to sit by himself. He couldn’t get himself in to the sitting position but after what felt like ages, he finally seemed to have the balance and coordination to remain in the sitting position. Happy days! Another developmental milestone ticked off!

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Asa finally sitting with no support!

December (2013) rolled around and Asa started commando crawling! Initially only one little movement a couple of inches along. It soon developed in to a quicker move. His left arm used to get stuck under his tummy and he would get frustrated. He soon improved. Almost a year on from that and he is quite possibly the fastest commando crawler in all of the UK, maybe the world! Everyone who sees him comments, “Isn’t he fast?” It still makes me smile to see him on the move, even if that means the destruction of personal property! J He has yet to master the tradition ‘four point’ crawling but has done it a handful of times. We just think he prefers the commando style as he’s now perfected it! I don’t seem to have many photos of Asa’s famous commando crawl, probably because he’s like a whippet!!! :-)

As Asa gradually got stronger, a few months ago he learned how to get in to the sitting position by himself, and back down again. He has had a standing frame from the NHS physiotherapist which we are supposed to strap Asa in to for ten minutes each day as a minimum and build it up. In reality, this was impractical as some days we were out of the house all day, or Asa needed his nap, or I had to prepare meals and so on. Over the summer, time at home was limited in dry weather as we all preferred to be outside, making the most of the Great British summer!

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Asa needs supportive boots to help him stand and help his ankle stay straight. Asa’s hypotonia and hypermobility extends even to his feet! Most children with DS will need supportive shoes.

For a long time, there didn’t seem to be any major developments in Asa’s life. He seemed very content ‘beetling’ along as my mum would say. For many months, there was nothing new to report. No language development, no gross or fine motor skills. I was starting to get a bit disheartened and prayed a lot for him to reach a few more milestones. We decided to try Asa again with kinesio taping, this time to help his leg muscles. We also bought a physiotherapy roll for Asa to climb over as he took a liking to the kineso taping practitioner’s roll! 

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Asa loved – and still loves! – climbing over this roll!
As you can see from the next photo, he soon worked out how to climb over it in the fastest time! Apologies for the blur but this is Asa in action…

20140619_101109In September this year, Asa started kneeling up – his physiotherapist calls it high kneeling. We have monthly physio sessions and kneeling had been something we have been working on for several months over the spring and summer this year, along with standing using his standing frame. I used to put him up against his now-too-small standing activity table in a high kneeling position, and sort-of wedge him between my thighs! (God gave me chunky thighs for this very reason!!!). This must have paid off as he started doing it by himself! Definitely a proud mummy moment (and daddy of course!). He soon realised that by kneeling he could reach things previously unobtainable to him – remote controls, TV speakers, magazines and books on the bookcases, tablecloth… I think you get the idea.

We are now in October 2014. Asa does not stop. He is on the go from morning till night, and quite possibly through the night! It is very fitting that it is Down’s syndrome awareness month and that I have re-started our blog because we have some big news – Asa is now able to stand! WOOOHOOOOO! He does it every day in his cot and he loves throwing his soft toys out of it. He has stood up a handful of times in the living room. Mostly he prefers high kneeling to get something he wants and if he still can’t get / reach something, he usually gives up!

Here are some photos of our increasingly strong little lad:

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Down’s Syndrome Awareness Month 2014

October is Down’s syndrome awareness month. I am aware that there seems to be awareness days and months, and national / international days for nearly everything under the sun, from serious illnesses like Cancer (and the many different types) to ‘Talk Like a Pirate Day!’ However, as Down’s Syndrome is something that directly affects my family and I, it seems fitting to jump on the proverbial bandwagon! Now, some of my super organised, committed blogging-world friends are blogging every day during October, #31for21 (31 days for Trisomy 21, which is the medical term for Down’s Syndrome). Any of my friends or family reading this will know that I am far from organised – in fact, ‘chaotic’ might be just one word they may choose to describe my life and home! I won’t promise to blog every day as our life is busy and there is always something to do, but it seems fitting that I should kick-start our family blog this month.

Thank you for following our story J