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

The EEG

Where do I start with this blog post?! The past few days have been incredibly stressful, worrying and full of prayer. Yesterday, Asa was in hospital for the day, in the Children’s Ocean ward. But let me start at the beginning.

A few months ago I discovered an amazing website, www.noahsdad.com. It’s a blog written by the parents, primary the dad, of a little boy called Noah who was born Down’s syndrome. (In America, the terminology is Down syndrome). Noah’s dad writes the majority of the blog posts, and his mum, who is a paediatrician, writes the medical posts. I read lots of this very informative and honest blog when Asa was very young. One stuck out in my mind. It was about Infantile Spasms, a form of baby epilepsy, which, if left untreated, can cause cerebral palsy / brain damage and regression in development. It is much more common in children with Down’s syndrome so it is something to be aware of. I filed it away in my brain with most of the other information I processed.

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A few weeks ago, Asa started doing some odd little movements. I can’t really describe it effectively, but his eyes would widen, he would shudder all over and his mouth opened in a strange and unusual way. Sometimes his arms would come out at 90 degrees to his body. At first, these ‘movements’ were 1-2 seconds long. Blink and you’d miss them. I didn’t tell anyone about them at first, hoping it was just my eyes. I think I was avoiding the issue. I was scared. One day I mentioned it to Jon, who had also been noticing them. After a couple of weeks, they seemed to be lasting longer and were happening more frequently. This past weekend, these ‘episodes’ were occurring as much as ten times a day, each lasting for up to five seconds. All of a sudden, I was frightened. Friends were around for tea on Saturday and one of their children asked me, “What’s Asa doing? Why is he shaking like that?” I was terrified Asa might have Infantile Spasms.

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On Monday, I called Dr Kontos, Asa’s paediatric consultant in Llandough. She was busy so I left a message with the receptionist. About ten minutes later, Dr Kontos called me back and told me she would like Asa to be seen at the Children’s unit of UHW as soon as possible. She had already contacted a doctor in UHW and both agreed Asa needed to have an EEG to find out what was going on – did Asa have Infantile Spasms? I was told I would receive a phone call. It was all a bit surreal.

At 8.30am yesterday, I had a phone call asking me to take Asa to UHW as soon as possible and they were booking him in for an EEG. I packed a little bag of food and clothes for Asa, and snacks for me, and headed off. We arrived at the Ocean ward of the Children’s unit and Asa was admitted as an inpatient. I later found out this was because he would receive an EEG quicker than as an outpatient, and then, depending on the EEG results, if medication was needed then Asa would stay in overnight.

Asa’s EEG wasn’t until later on in the afternoon, so I was feeling rather nervous and sick the whole day. The mum of a small baby girl opposite us was very friendly, but I felt myself getting teary talking about Asa. I gave Asa his lunch, which he refused. He even cried on his yogurt which is very unlike our sweet-toothed (or sweet-gummed?!) boy!* I just had time to wolf down my lunch before we were called for the EEG.

The EEG itself wasn’t as scary as I’d imagined. The lady conducting the test was very nice, but factual. I can’t remember her name or her job title. I’m normally not too bad at remembering these details, but I think I was feeling the strain! It turned out she was a Christian too. Isn’t it wonderful that when we’re in stressful or difficult situations, God often reminds us that He is there with us? She pasted little wires to Asa’s head, whilst explaining the procedure. (For some info on EEGs, click here).

Asa would need to asleep for half of the test and awake for half, as the electrical signals in the brain are different when we’re sleeping. The wires were linked to a computer which recording the brain’s activity as waves, with peaks and troughs. When Asa was awake, he had bright lights flashed very close to his face for set periods, as well as letting him play. A camera was recording the whole time to capture any ‘episodes’. About 35 minutes later, we were done. It felt like forever, especially as my arm and shoulder felt paralysed from holding Asa still! The neurologist would look at the results and decipher what the various waves meant. We were taken back to Ocean ward to find Jon waiting next to Asa’s empty cot. It was amazing to have him there. I will tell Asa one day of how his daddy was there for him, awaiting his return.

Finally, the results were back, albeit very late in the afternoon and we thought we’d been forgotten about. The hospital doctor we saw on admission came to tell us the good news that Asa’s EEG showed no signs of infantile spasms and that as he wouldn’t need medication, we were able to go home straight away! She said that although Asa had no EEG evidence of IS, she couldn’t rule out other abnormalities – if we notice anything we are unsure about regarding Asa’s behaviour, that we are to see Dr Kontos.

So, for now, we are relived to be home with Asa having had the all-clear for IS, and we are thanking God for this good news.

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*The reason Asa refused lunch and desert was because later that day, as I was giving him his milk and snack before leaving hospital, he was very sick. Twice. One vomit completely covered me and I had no spare clothes. How miserable! And then the poor little lad was sick a further three times in the car on the way home. D&V bugs really are not fun!!!!

‘Speak And Learn’

Today was Asa’s first ‘speak and learn’ group. This is a ten week block group therapy for children with Down’s Syndrome and their parents. The aims of the group include helping to develop communication and to encourage the use of Makaton signing.

If I am honest, I was really nervous about it last night. ‘Sicky stomach syndrome’ reared its head. Irrational anxiety. Head and heart in opposition. I didn’t want to go. I didn’t want to go to a group that was just for babies with DS. I didn’t want to be in a room full of others like Asa, acknowledging that he was there because he was different and in need of extra help and support. I didn’t want to have to make polite conversation with other mums and dads because the only thing we had in common was that our kids had DS…

Notice that all these things above are talked about in the past tense… Because in reality, my prejudices and anxieties were squashed after about a minute! In reality, this couldn’t have been farther from the truth. In fact, I LOVED it!

There were only two other babies, J, a boy aged 7 months and L, a girl aged 9 months. Asa is 6 months old now, and so he is the youngest – and smallest! The mums and dads were also lovely, very supportive and kind. There should be more in attendance next time as some couldn’t make it. The leaders of the group were lovely. It was a very positive experience. We sang, learned play techniques, basic age-appropriate Makaton signs, sound cards, talked about a few different things like drinking cups, weaning, and we were shown some facial exercises to do with the babies. One mum previously in the group called it ‘face gym’ – I quite like that. Doing these exercises daily should help our children’s facial muscles get stronger, which will help with speech, eating etc. Talking to other mums, it is clear that DS isn’t the only thing we have in common. We’re all mums, we’re all tired and all want the best for our children! :-)

As well as the ‘face gym’ exercises, we were given the sound cards to do at home. They seem a bit bizarre, for example, the ‘sound’ for the cow isn’t ‘moo’, it’s ‘mmm’… The ‘sound’ for baby is ‘g(uh), g(uh)’… It’s a tried and tested speech therapy technique so I’m not arguing – but it does make me feel a bit of a melon doing these cards!!!

All in all, it was great. Asa, despite usually needing a nap at this time of day, seemed to enjoy it. Hopefully he, J and L will be buddies as they grow up. I can’t wait for next week’s session!

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Tonight, Lucy, a dear friend, asked me how I was and how all the appointments were going for Asa. I love this friend. Every time she asks about me, Jon or the children, I know with certainty that she is genuine and I can be totally honest with her. What followed was a conversation about DS. I love that Lucy is genuinely interested in Asa’s development. She asked sensitive questions about his appointments, about future schooling, etc. I am far from an expert on DS, but I do appreciate being asked questions about it, even if I don’t always know the answer. I’m not a fragile doll that will break if you mention the phrase ‘Down’s syndrome’. I’d much rather people ask me about it than point and whisper about it, or think I’m too emotional to answer. Because it really is ok!!! If I can help raise awareness in an open and honest way, while not looking at things through ‘rose tinted’ glasses, then that makes me happy. I would much prefer you to ask me a question instead of a saying a generic, outdated statement such as, “They’re all so happy and loving” or “they’re all musical” (which Asa’s consultant told us when she gave the diagnosis, grr) – you probably won’t get much out of me if you come at me with these stereotypical sweeping statements…

So to all of you who have asked genuine questions, no matter how ‘silly’ you think they are, thanks!

I’m on twitter: @lizzshaw01 and on Facebook so if you have a question, ask me! Even, better, see me in person! I won’t bite (well, probably not). :-)

Orthoptics

10.30am today, Asa had his second orthoptic appointment at UHW. I wasn’t so nervous this time. Probably because I assumed the eye tests would not be as invasive as before… I was wrong! The same pattern of three lots of eye drops ten minutes apart, followed by a call in to the doctor’s office. There were two trainee doctors in with the senior doctor today. He explained what he was going to do – check the eye condition, followed by a developmental eye test. Just like before, Asa didn’t stay still or keep his eyes open, so he needed to have the anaesthetic eye drops before the nurse held him down so the doctor could clamp his little eyes open, one at a time…

Asa howled, much like he did before. Even though I knew what to expect, I still got so upset – and again, mummy ended up in tears! The poor trainee doctors didn’t know where to look as I sniffled and rummaged for a tissue in my bag. They were male and probably not used to crying women! I hated being there on my own. I know, I need to ‘man up’ as Sian Hampson would say! I think though that any mother hearing her baby scream while being held down and seeing metal clamps in their baby’s eyes would probably get upset too… It really isn’t a pleasant experience for me, let alone Asa…

Next, the doctor told me he was going to check Asa’s eyes to see if he would need glasses, even at this early stage. Oh wow, I hadn’t known this was possible at such a young age, and ‘sicky stomach syndrome’, as I call it, reared its ugly head. Asa sat in my arms as the doctor dimmed the lights and shone various lights in to Asa’s eyes to track his eye movements. I prayed all through this stage, silently of course. When the doctor was finished he told me that at the moment Asa’s eyes are the same as any other typical baby and his eyesight is ‘normal’. Asa will need regular eye exams as about half of all people with Down’s syndrome will have vision problems. Our next appointment is in August, so for now we’re thankful that Asa has healthy eyes, that he doesn’t need glasses and that we have a few months to breathe before his next check up comes around.

Please join us in praying that Asa’s eyes remain healthy and that he won’t need glasses! (Not that there’s anything wrong with glasses, I wear glasses! But I’m not sure about glasses on a baby or toddler – I can imagine they would get pulled off a lot and easily damaged!!!).

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Mummy&Asa 22 weeks old
Much needed cuddles with mummy… Oh, how we love you and your sister.
You are both amazing! -x-