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.

 ***

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.

***

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.

***

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.

***

*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!!!!

Donkeys, Reflux and Love

The sun is shining in Paignton. We’ve had a lovely time on the church weekend away so far, and today is our last day. It’s also been a bit stressful. Both Emelia and Asa were unsettled on Friday night – Emelia was awake until about 11.45pm. Asa was being a monkey and rolling over in his travel cot every five minutes. I was confined to the hotel room in the dark, with no wi-fi or phone signal. I suppose being somewhere new, and everything being different, most children would be the same.

With that behind us and a fresh start the next day, we were able to enjoy some of the teaching from Simeon Baker, our guest speaker. We had a free afternoon yesterday, so we headed to a lovely restaurant for lunch as a family. The venue had beautiful views from its elevated position overlooking the pavilion and the beach. After lunch, Emelia joined the other children from church in the park while we tried to rock Asa to sleep in the pram! Donkey rides were also available – and as you can see, Emelia seemed to enjoy it!

20130420_15391920130420_15374220130420_153714
Emelia’s friends, Shanisha and Evie, also enjoying a donkey ride!

***

I’m going to take a moment to be open and honest with you, friends. Last night, Asa’s reflux was really bad. Vomiting everywhere. I couldn’t escape the smell of sick as it was on my scarf, t-shirt and trousers, not to mention on his bib and sleepsuit. I was teary and snappy with Jon and I wish with all my heart I didn’t take my frustration and hurt out on him. I’m not proud of how I react sometimes, and I more aware than anyone of how impatient I am, and how quick I am to get angry. Sometimes when I’m super-stressed, particularly lately, I’ve sadly been questioning God and why He chooses sometimes not to answer our prayers, especially ‘good’ prayers for healing for a loved one. I say ‘sadly’ because my faith has usually, nearly always, been strong…

At times when the reflux is bad, I cry out in prayer to God for him to heal Asa. Literally, cry. But for some reason, He doesn’t… This isn’t a prayer for material things, for more wealth or power, or personal gain, but for my precious little boy. I know it’s not ‘a big deal’ in the grand scheme of things related to Down’s syndrome, but it affects me, stresses me and upsets me, not to mention Asa. I wish I was stronger, more resilient, more trusting. Friends, at times, I feel so alone, even abandoned by God – and it upsets me that I would even have these feelings. As a youth leader in the church, I often remind the young people that we cannot trust our feelings. They fluctuate and are not always accurate reflections of how things really are. Sometimes, my heart and my head are in opposition, but I plod on anyway, rebuking the negative thoughts that occur in my questioning. Therefore, I have to keep reminding myself that God IS good. That I am NEVER abandoned by Him. That He sees our family is hurting, feels our pain. That He walks with us through the good times… AND the bad times, the disappointment and mire of our troubles.

This leads me on to Simeon speaking in communion this morning. He spoke for only five minutes, but it was as if God was speaking directly to me through him. He spoke on two verses. Yes – Ephesians 5v1-2:

“Follow God’s example, therefore, as dearly loved children and walk in the way of love, just as Christ loved us and gave himself up for us as a fragrant offering and sacrifice to God.”

The key part of the message that my heart thirsted after was this phrase, dearly beloved children”. It struck me so powerfully that I began to silently cry as I listened intently. God was clearly showing up for me, reminding me – and everyone there – that He does love us. He calls me ‘dearly loved’ and that is so amazing, that the God of the heavens and the earth loves me, despite my many flaws and sometimes wavering faith. What’s more amazing though is that He calls me ‘child’. I am His, and He is mine. My perfect, wonderful, awesome Father in Heaven calls me His.

I am so grateful for Simeon bringing these truths out this morning. It was exactly what I needed. Don’t we all just need that reminder sometimes? That we are loved, precious and worthy. You, reading this, are loved by God as a dearly loved child. Take a moment to absorb that fact, and praise Him.

Baby Babble At Last!

TODAY, ASA STARTED BABBLING!!!

Unexpected.

Out of the blue.

Emotional.

Over the moon.

I didn’t realise how much I had been longing to hear those first few proper sounds come out of his small mouth. We were at the Harvester for Emelia’s birthday meal, and Asa just started babbling! He made a range of sounds, including ‘b(uh)’, ‘d(uh)’, da’ and even ‘m(uh)’, repeating them often.

I cried. I squealed with delight. I know this may seem a strange reaction for you, the readers of this blog. But as his mummy, I was so happy. I regularly pray for Asa’s speech development and was starting to worry that no sounds had been made, other than the favourite ‘raspberry’ and a long ‘ahhhhhhhh’ shout kind-of noise! I have often wondered with a tinge of sadness if / how his hearing loss might impact upon his speech and language development…

Today feels like a huge leap forward. I am looking forward with eager anticipation to Asa’s speech properly developing. I long to hear him say, “Hi mummy”, or “Goodnight daddy”. In fact, I am looking forward to this just as much as I did when Emelia was little. I am not naive to think his speech development will be plain sailing – children with Down’s syndrome often have delayed language skills and require speech therapy (hence the use of Makaton signs) – but today has given me hope that we are on the right track, however long it may take. I know he will get there. In his time. In God’s time.

***

For our Christian friends and family… some prayer points if you’d like to pray:

– Praise God for Asa’s latest development and pray he’d continue babbling regularly!

– For Asa’s future speech development, that he would have speech that is clear so he would be understood by those he is in contact with as he grows up.

– For his hearing to improve (next hearing test is April 25th), so that it would not be a barrier to effective communication.

– For Jon and I to continue to be motivated to work on all the necessary exercises needed for Asa’s development, e.g. speech sound cards, physio exercises, facial exercises, sitting up, rolling, and Makaton signing.

THANK YOU! :-)