Talking to midwives; Tell it Right


In the last few months I have had the pleasure and privilege of speaking to midwives about the language used when a baby is born with Down’s Syndrome. The Down’s Syndrome Association arrange “Tell it Right” training days where parents of children with DS can share their experiences (good and bad).
The first time was in April at the Eastbourne campus of the University of Sussex, speaking to student midwives and then more recently, (this month) at the Royal County Sussex Hospital, speaking to qualified midwives and those involved with the screening process.

At both talks I gave a raw and honest account of my feelings when Audrey was born, how those feelings changed and what life is like for us as a family today. As I came away both times feeling like I’d missed certain details, I’m writing this post to cover everything I said and also everything I wanted to say. I hope this proves useful for anyone (NHS professionals, friends and family, new parents…) involved in the birth of a baby with Trisomy 21 (ooh I don’t use that term much, it’s the medical name for Down’s Syndrome).

My pregnancy with Audrey was lovely. I had no morning sickness, felt relaxed and happy and just had a bit of heartburn to contend with. We had the nuchal fold screening at 12 weeks – our chance of a baby with Down’s Syndrome was “low risk” – 1 in 1,000. We received that news in a letter and thought nothing of it.

The day Audrey was born was a scorcher in July 2013, I had concerns over lack of foetal movement, so I ended up at the Royal Sussex County Hospital just after 6pm with my friend. I was hooked up so the baby could be monitored, they soon decided she was in distress and needed to come out, I was not in labour so the only option was an emergency caesarean. It was a very quick turnaround, this news was delivered to us at around 6.45pm when my husband walked through the door. Audrey was born at 7.51pm. 

My first sight of her was wrapped in a towel in Ted’s arms. I saw her eyes and I saw it then; Down’s Syndrome? She was laid on my chest for skin to skin and as soon as I had full view of her I knew; I said “This baby has Down’s Syndrome”. I felt sick inside. Ted went to speak to someone (even though he felt silly asking, because clearly our baby wouldn’t have Down’s Syndrome), but they said that indeed, there were “markers” – a hand crease, a toe gap, the eyes… but then she was whisked away to the baby unit for care and I was left to recover. We were shell-shocked. It was a bad dream… wasn’t it?

No one said anything stupid at that time. I say that because people do. I’ve heard lots of examples, from “he’ll never give you grandchildren” to “some of them even read nowadays”. These are not helpful statements. Ever. But certainly not in the minutes/hours/days since your baby has been born. How about we just treat this situation like we should; a human baby has arrived. One that has a condition that tells us a bit (but not all) of what they might be like, of what challenges they might face. No one is born with a life CV. Can you imagine getting a note with your baby that says “Will have a series of dead-end jobs, have two failed marriages, get fat, get diabetes and struggle with an alcohol problem”? Doesn’t sound like a baby you’d want to raise. But there are no gold star life guarantees with a baby. 

Whenever I revisit Audrey’s birth I cry. I want to go back and take away the fear, take away the dread and the denial. We had chosen her name before we knew she was in there, we had a name for our potential girl and a name for our potential boy. I put a “pause” on that when she popped out. I asked Ted if we could use our back up name. I felt this wasn’t my Audrey. She wouldn’t be pretty or delicate as I imagined, she was now something else. Something ugly. I’d have to have another daughter without Down’s Syndrome to name her Audrey… Thankfully Ted stood firm and made me realise; she wasn’t a second choice baby, she didn’t deserve a second choice name. She was our Audrey, we just hadn’t realised. And wow, is she more Audrey than I could ever have imagined! A child so beautiful and delicate – my heart swells with pride and joy everyday because of her and how she is. I never could have imagined in those troubled 24 hours just how lovely she would be, but more than that, how she would exceed our expectations and make us proud to be her parents.

Audrey needed oxygen (it’s thought due to a floppy larynx), for 6 months, but had no other health concerns and she breastfed (I’ve also heard stories about people being told babies with DS can’t breastfeed, but that isn’t true). Having her attached to machines, looking so helpless, well it kind of helped us gain some perspective. It was certainly better to have this baby with a condition than no baby at all – you can quickly push a syndrome aside when you are worried a baby might not live.


I’d like to add that having Rex gave me a new perspective on Audrey’s birth- because I felt a similar numbness, shock and confusion at the sight of him and he clearly didn’t have Down’s Syndrome. A woman who has just given birth is in a crazy place mentally – it wasn’t a rush of love and perfection for me at either birth. The Hollywood movies lie. Both times I was surprised by the baby I saw, I had somehow projected so far that I had pictured my baby and the moment they arrived and nothing could ever measure up to that expectation. What a bummer.

But I’m not trying to disguise the fact that having a child with special needs can be challenging. It was tough to have a baby in hospital for the first 3 weeks of her life. Of course we didn’t enjoy her being on oxygen for 6 months and I found it frustrating when she still wasn’t walking at 3, but that time and those struggles seem like a small blip now. 


We have a walking, talking almost 4 year old who likes books, dolls and music. She attends  mainstream nursery, which she loves. She squabbles with her younger like any other little girl would, loves chocolate cake and Mr Tumble. 

She comes out with some of the best phrases;

“Mummy’s making me happy”

“Take your shoes off!”

“Oh Mummy I love your jumper”

Just yesterday she told her daddy he was “Looking fresh!” and this afternoon she said (to a 17 month old who had visited us) “Goodbye! Thanks chunky legs!”.

She cracks us up!

So what do you say if a baby unexpectedly pops out with Down’s Syndrome? First, congratulations. Yes of course deal with/discuss any immediate health challenges, but if the baby is healthy, you could mention that they have a “naturally occurring chromosomal arrangement” (thank you Rose Mordi, President of the National Down Syndrome Foundation of Nigeria).

Then you could go on to say that you’ve met families with children with the condition and they had a lot of positive things to say, but above all, they loved and enjoyed their child. Their only regrets; that they could have known from the beginning that this wasn’t bad news, it was just different news. 


We adjusted to our new path quite quickly really, Audrey went from the worst thing happening to us at that moment, to being a baby, to being a baby we loved, to being this awesome child that we get to raise! Now we show her off at every opportunity and we marvel in all the things she is teaching her younger brother. We are so lucky to have two beautiful, wonderful children, both of whom are a challenge(!), but that make us  happy.

Sometimes the lows make the highs much sweeter – I truly love that I have gone from fretting about her lack of future (in those early days) to being excited by all that she can and will achieve.

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The Wobbles

I spend a lot of my time thinking about Audrey and how much I love her. How great she is. How she has exceeded expectations and challenged my world view and my view of people with Down’s Syndrome. But sometimes I do still have a wobble. I do let negative thoughts creep in and I do worry.

The other week I took Audrey for her thyroid blood test. It’s not a pleasant outing, I know they are going to hurt her (or at least make her uncomfortable) when they take the blood. So it’s a time when I think “it sucks that we need to do this, it sucks that Audrey has Down’s Syndrome”. And so I wobbled. I felt angry about the Down’s Syndrome. 

Whilst we were there, a lady walked by with her teenage daughter. They were both slim, well dressed and they seemed to get on really well. At the time, Audrey was arguing with me over finishing her sandwich. I felt another wobble… that we would never be those two “perfect” mother and daughter types. Such a silly, shallow thought. But I felt sad she wouldn’t be this elegant model-like teenager, making boys heads turn. And as I write this I recognise how unimportant it is that she is “pretty” by typical standards and that boys fancy her. I guess it’s sometimes more that I worry her condition robs her of certain standard life experiences. 

We filled out more forms for disability living allowance, as we can get a higher rate of Audrey isn’t walking. Initially I felt it was pointless – she is walking now. But on further discussion I realised that walking across the living room and then landing on your bum is not walking like a usual 3 and a half year old. She can’t walk down the street to the shops, she can’t walk to the car and climb into her seat. We have made a massive leap forward with the walking, but we still have far to go and that’s annoying!

Sometimes when I’m talking to other parents and the subject turns to when our kids grow up and become difficult teenagers/go to university/have kids/end up looking after us… I feel a little pang inside. I wonder if they are thinking “Yeah, but not Audrey”, I guess I worry about their negative thoughts as much as I worry about my own.

I wanted to post about this to be honest about the fact that I’m not always happy and steady on our path, sometimes I do fret about Audrey’s future. No matter how secure and content I feel about her, it doesn’t change the fact that we face challenges that typical families don’t.

I have to remind myself that nobody really knows what the future holds. No one can be truly secure in what they will become and how their/their children’s lives will pan out. It’s freeing to think that and try to “let go” and continue with the positivity – that Audrey can only get more fabulous. 

Audrey and Rex, December 2016

Walk the walk

As you’ll have seen, I post a lot of positive stories about Audrey. It’s hard not to. But I want to be honest about something I am finding difficult; the fact that she can’t walk.

When she was born, one of the many things we were prepped for was the difference in when a typical child walks and when a child with DS does, I was pretty confident Audrey wouldn’t be too far behind her peers. I expected she’d be up and running around 2.

Well, we’ve passed her third birthday now and she hasn’t nailed it yet and let me tell you why that sucks…

I feel like she has lost out on a period of her childhood; outdoor activities, soft play, dancing, exploring and running after friends. I know this will come, but her friends have had this kind of childhood since they were 12? 14? 16? 18? months (I’m not even 100% sure when!).

In many ways she’s an easier child for me as a non-walker (less so now we have Rex), although I don’t want her to walk to help me out. I feel like she is being robbed of a typical childhood. It makes her officially “different”. Yes I know she is different, but at this age, kids are just kids. They play with each other at mixed ages and mixed abilities, but not being able walk puts her way behind.

My husband is a bit more laid back about it and I wish I could feel the same. Ultimately I do have to be patient, I can’t let frustration take over because that’s not going to help, but her almost 6 month old brother is rolling and pivoting and getting into things… he will be crawling soon and before we know it – walking too. It seems so crazy how quickly he is getting there and how slowly Audrey is.

But, hey, as I’ve said before, it is best to focus on what your child can do, rather than what they can’t and Audrey’s communication skills have excelled beyond our expectations. She sings so many songs (from Old Macdonald to Queen’s We Are the Champions!), she “reads” so many books and she is really polite – she even says “Thank you Rex” when she has given him a toy. She’s fabulous.

I guess I’ll have to wait for the running and jumping… I’m sure once it comes I’ll be so tired out by her (and Rex), I’ll be wishing for the bum-shuffling days? We shall see.

Here she is working hard at conductive education:



 

 

Audrey 2

When we had Audrey, we didn’t know if we were having a boy or girl and we didn’t share our baby names with people. We were looking forward to the surprise.

Strangely, my mother, who was obsessed with us promising that we wouldn’t make a name up or have something American sounding that’s really a surname (Taylor, Page, Madison…), found Audrey to be a shock name choice.

My brother overheard her telling relatives on the phone (as she rang around to confirm Audrey’s arrival); “They chose the name Audrey as they love Audrey Hepburn and Vicky loves The Rocky Horror Picture Show so much” (!). Hilarious. Yes, she meant Little Shop of Horrors and, no that wasn’t really part of the naming process.

Anyway, this was post was drafted to announce a little “Audrey 2” in my tummy, but sadly it’s sad news instead.

A few weeks ago, at 10 weeks pregnant, we had a miscarriage. As I type that, it does feel strange to be sharing something so personal online, but the fact is, it happened and we’re ok.

When I lost my job, I was about 5 or 6 weeks pregnant and I was instantly worried about how we were going to cope financially and also how on earth I was going to apply for jobs knowing I only had 6 months worth of work before going off to have a baby. But we had to get on with things and the pregnancy was good news, so we couldn’t let redundancy overshadow this.

The timing was very similar to Audrey, her due date was 17th July, this baby’s was 2nd July. So like my pregnancy with Audrey, we planned to tell family at Christmas, with a toast to the new baby on Christmas Day. Sadly, this was not to be, but we were very lucky in that this happened to our second pregnancy, so we had Audrey around to keep us smiling. She made all the difference. And at 10 weeks, we weren’t too far along. It was devastating, we had started planning for Audrey 2, but it wasn’t quite as I had imagined. Not quite like the drama in the movies… for example, we got the bus to the hospital. Seems so silly now. The early pregnancy unit is closed on weekends, so we had to sit in A&E for an hour or so. It was… unpleasant.

We still hope to grow our family and would love for Audrey to be a big sister, but we recognise how fragile human life is and how lucky we are to already have a beautiful daughter in our lives.

Sorry for this depressing post. Belated Christmas wishes to you all and have a Happy 2015!

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Getting home

Audrey was in the baby unit for 3 weeks, as I type that now it sounds like no time at all, but back in July 2013 it felt like forever.

I was in hospital for 6 nights after the c-section, shuffling up from floor 12 to floor 14 to breastfeed Audrey. We then spent a week or so commuting in on the bus to our “part-time” baby. It was definitely not the start we imagined.

Audrey was allowed home with oxygen, so she had to wear a cannula and be plugged into a machine in our hallway or to a travel canister whilst out and about.

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It felt like such a huge burden to have that tube on her face… Especially as the weeks passed and the sleep studies showed she still needed it. But again, I can look back now and feel relieved that we only had to deal with it for 6 months, such a short space of time in the scheme of things. There’s still a chance she will need it again in the future, but for now we are so happy to have her free of tubes and plasters!

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