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.

40 week’s pregnant disorganised person

It’s was my birthday yesterday at 40 weeks pregnant. Yep, birthday due date for a birth-day.

First time around Audrey got the star-prep: hypnobirthing, raspberry leaf tea, fit ball bouncing, massage; all the recommended stuff. And of course, I had no labour and a quick c-section.

Second timer gets: day 39+ 1 = first listen of hypnobirthing CD. 39+3 = reading breathing techniques. 39+6 = damn, no raspberry leaf tea in our local Sainsburys. 40 = waters break and we realise newborn clothes are in loft and need washing.

Basically I’ve slacked off because I have another child who is my entire focus (at least, that’s my excuse!).

On the plus side, I have packed a thorough hospital bag. So we (Ted) lug it across town, getting the bus so we can stop off and buy baby clothes on the way. I’m checked over and as I’m not in labour, we get sent home to wait and see what develops. Audrey is enjoying a mini break with her Bibi (Grandma), so after lunch we basically sleep. 

So here I am on week 40+1, contractions came and went in the night, so we are on our way in to be induced. The house is a mess, I’ve been last-minute cramming with my hypnobirthing book and I think maybe we’ll treat ourselves to a taxi ride to hospital today!

The little man will hopefully be with us today/tomorrow! Eek!

Here’s one I made earlier…

  

Audrey’s story begins…

The story of Audrey begins sometime in the 1990s when Mummy (Vix) and Daddy (Ted) first met… but let’s fast forward to 2006… Vix and Ted get together… fast forward to 2012… Vix and Ted get married… then November 2012… when a stick finally confirmed a baby on the way…

From that moment we were in love with our baby and planning his/her future. The holidays we would take, the music we’d dance too, the games we’d play… then the adult child; college, university, their profession, their wedding, the grandchildren… pregnancy was all about the excitement of what was to come!

Being pregnant was pretty fun for me, the cravings were ice cream, yoghurt, milkshakes, coconut… the baby was a real kicker which was a lovely way to stay connected and feel reassured. We took hypnobirthing classes and I had wonderful naps to the relaxation CD. Aside from a little bleeding early on, regular heartburn and some swollen feet, it was a pretty easy pregnancy and I found the whole experience enjoyable.

Monday 22nd July, 5 days past our due date, I was still very relaxed and convinced the baby would eventually be induced. It was ‘royal baby day’ (Kate was in labour) and there were a few texts and messages asking me if I’d had any twinges and of course I told everyone there was no way we’d get our silver penny… not an inkling of labour in sight…
It was crazy hot and I walked into town in a long summer dress to pick up supplies (pineapple to bring on labour, my favourite iced spiced buns from M&S…). I bought new socks for Ted so he could finally throw out odd and hole-ridden ones. I was mildly concerned that baby hadn’t been as active as normal, but decided I was probably over-reacting. I had lunch. Still no kicks. I read online how to encourage movement… drank some ice water, ate some chocolate. No kicks. I watched some Gossip Girl, tried to relax… but all I could think was “I do not remember this baby kicking today”. By now it was about 3pm and I decided the relaxation CD (for hypnobirthing) was my best bet… baby always kicked just as I was trying to relax/fall asleep! The CD finished, I woke up and yet again… no kicks. Between telling myself the baby probably kicked at some point without me noticing and crying because I was sure that couldn’t have happened… it got to 5pm and I called my husband. Of course he was calm and told me I should call the hospital and see if my friend Becs was free to go with me, he would make his way there asap…
Even with the tears and the worrying, I still expected to be checked over, told all was fine and be sent home, I remember Becs and I were in a taxi just after 6pm, we were taken into a room on the labour ward triage and two midwives rigged me up to the monitor… the baby’s heart beat was there! Hurrah! All my concerns fell away…Then the midwife said there were dips and that the baby was possibly reacting to some braxton hicks (tightenings), but it was also possible the cord was being affected and I was asked to lie on my side facing the wall. I felt silly as Becs was sat in a chair and I couldn’t see her. I kept waving at her and saying “thanks for coming!” – still thinking it was no big deal. A doctor came in and calmly explained that the baby was in distress and they would be checking to see if I was in labour and would try to break my waters… Just as this news was delivered Ted arrived expecting a scene of “all ok, go home”, but finding instead our baby was going to be on the way one way or another that evening! Once it was apparent I wasn’t in labour, I was told they would like to proceed to emergency c-section and I’m proud to say my husband asked for a minute alone with me to discuss this decision. He knew c-section was something I dreaded. I cried, filled with panic and that stupid feeling that a non-natural birth was a failure… We asked the doctor if we had any other option… We didn’t. And so I just went with it, if the baby is in distress and needs to get out, then so be it. I still feel so strange that at 6pm I was in a taxi with my bump and by 7pm I was being prepped for surgery.

Our baby was born at 7.51pm – it was all so quick. Baby was delivered and I heard no cries which was the first alarm bell. Ted told me it was a girl and I welled up a little as I was so convinced we were having a boy. He was first to hold her, she was wrapped in a towel and I could just see her eyes peeking out – I knew then she had DS. I kept asking Ted to show her to me – I couldn’t see enough of her face…
I said “She looks like a little monkey!” And they prepped for skin on skin… She was laid on my chest. I could see her clearly now and I just thought “this baby has Down’s Syndrome”. So I quietly said it to Ted. I remember hearing him say “Er excuse me, but my wife thinks the baby has Down’s Syndrome…” And they took him to the side to explain the signs were there, but they couldn’t confirm either way without a test.

It was like an out of body experience, I was removing myself from the situation, from the baby, “this baby has Down’s Syndrome…” as if they’d given me the wrong baby. She was rushed to the baby unit, I was taken into the recovery room. We were apart for hours. I can’t say how many, it’s a bit of a blur, but when I was wheeled up to visit her I still felt so confused and so numb.

And so like many who have a baby with DS, a joyous occasion was filled with confusion, worry and upset. If only we’d known… But you could never get someone at that stage to understand that no matter what, you will love your baby. Your baby will be perfect to you, no matter what health issues or differences to typical babies he/she may have.

24 hours after our beautiful Audrey Emily was born, I was taken up to the unit to breastfeed her. This was a moment that made me truly realise I had a baby and I needed to be there for her. I honestly believe that 50% (maybe even more) of the weirdness was due to the c-section, it wasn’t all Down’s Syndrome “upset”, but regardless, at that moment I felt much more connected to our little Audrey.

Something you can never expect to know… A baby with DS is still a baby. Still a joy, still your baby to be loved. There is a lot to take on board (health worries, a different path…), but aside from that, the baby will reward you with the same love and smiles you’d get from a “typical” baby.

More to come, can’t believe I’ve finally written the “birth story”, it’s taken 7 and a half months… But Audrey does keep me occupied!

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