Down’s Syndrome

Future DS Mama…

~ Vickywoo ~ Leave a comment

I was sent an email (along with a handful of other DS mummies) this week… A woman in our area is 16 weeks pregnant and has had a blood test that has revealed a 99% chance of Down’s Syndrome… She has reached out for advice and I was more than happy to speak to her. We squeezed in a ten minute or so telephone chat whilst I wandered on my lunch break and she found a quiet spot in her office. And of course I came away thinking of all the things I should have said…

Unfortunately I couldn’t offer her the perspective of someone who had a prenatal diagnosis of Down’s Syndrome. I simply do not know what it’s like to be told that the life in your tummy is 99% likely to have DS and for that mysterious “bad news” to be hanging over you throughout pregnancy.

Ted and I have always said we were glad we didn’t know. I imagine the pregnancy would have been ruined by the dark cloud hanging over us. But then, is there something to be said about preparation? Would I have felt more joy/relief/love when Audrey was first born, had the DS been expected rather than a shock?

I spoke to the lady in question, starting by letting her ask questions, she kicked off with; “Well my mother said I wouldn’t be able to work if I have this baby, I’ll be at home caring for him/her, but obviously you’re at work? – Does nursery cost more?”

Yes I’m back at work three days, Audrey is at nursery twice and spends one day with Grandma (or Bibi as we have chosen). I said that possibly nurseries find a child with special needs a positive thing – they get funding and guidance on sensory toys etc. but at the moment, her needs aren’t very different, so it’s not a big deal for her to be at nursery.

We talked about health issues (Audrey being on oxygen for 6 months), the fact that once we got over the shock, we just had a baby to deal with… And she told me they have the heart scan for the baby this week so I said that could be helpful in putting their mind at rest. If baby escapes a heart issue, that’s a good sign… She did say they went for the amniocentesis but she couldn’t go through with it – she got upset seeing the baby on the screen. So I guess she’s not keen on termination. However the discussion revealed her partner was perhaps leaning that way.

She was going to meeting with another DS mama that evening and I think there were at least 4 of us on the email. But I still felt I had to get her more help, so I emailed some contacts and sent on the email address of someone who did know they were carrying a baby with DS. I’ve passed on the contact and stepped back.

I desperately want to email her a ton of blogs and websites, as well as say; “No matter what, I guarantee you will love your baby” and basically flood her with positivity in the hope she will keep this baby, but of course that’s not the right way to go about this. She needs space and not some crazy person begging her to keep a child with special needs!

I guess I’ll know which way things go when she either turns up at a DS group… Or we never hear from her again.

What say you?

~ Vickywoo ~ Leave a comment

I’ve read a few posts about the best way to react/what to say when a friend or member of your family has a baby with DS and a year down the line I feel I can add my 2 cents.

As with anything in this world we’ve found ourselves in, I often wonder what I would have been like on the other side of the fence… If a close friend rang me to say they had just had a baby and – shock – the baby had DS… Would I have said the right thing?

A couple of weeks ago we were at my brother’s 40th birthday party. Many of his friends had last seen me when I was pregnant, or even before that, none had met Audrey yet, a few had seen her via Facebook pictures and videos. Now, the drink was flowing and it must be tricky chatting to someone who’s had a child with DS – do you make reference to it or not? But two of my brother’s friends (both male) had similar conversations with myself and Ted that we discussed the following day. To be honest, we just laughed/shrugged it off, but we acknowledged it’s a shame people have this response… The general gist (and they were in no way trying to be offensive, both the complete opposite) of their chat was; how well we were “coping”, how it must have been “devastating” and what “a blow” it must have been… Even typing this I’m thinking, “oh it’s not such a bad response”, and as I’ve said, they weren’t trying to be negative, but the truth is the best responses have been those who either don’t mention it and just ask how she is, how parenthood is treating us etc. or those who ask questions about DS in a genuine ‘what does it mean’ kind of way.

Yes, at the time we probably were devastated, but that seems like such a wrong reaction now. With the knowledge we have now, I’d never describe it as devastating. I’d say we were shocked, but hey, she’s perfection now, so we’re over it. I also wanted to laugh a bit about “coping” because at the moment we are just coping with having a baby… Same as any other parent, no one would mention how a parent of a typical baby was coping so well with handling their little one.

Our friends have actually all been fantastic, we really can’t complain. Audrey has a massive fan club, a ton of love and 99% of the time people say the right thing.

But back to responding when you hear the news that someone you know has had a baby with DS:

1. Congratulate them. Please. This is by far the best response.
2. Ask the normal questions about time of birth, weight, whether the little monkey is sleeping well etc.
3. Do express concern over any health issues etc, but don’t make assumptions about what the DS means (oh you’re breastfeeding? I heard they can’t breastfeed? Does baby cry? I don’t think they really cry much do they?).
4. As time goes on, be mindful that milestones might be delayed (we are constantly asked if she is walking yet and we haven’t got to crawling yet). Perhaps just asking how the baby is doing in general is an easier question for parents to respond to. I’m very proud of Audrey’s rolling, babbling, waving, clapping, kisses… Oh I could bore a lot of people with things she’s achieved, but it’s not my favourite thing to explain we don’t know when she’ll be walking.

Just try to remember, a baby coming into the world… That’s an amazing thing that needs to be celebrated. I wish we’d have celebrated more in those first difficult days… We are certainly making up for it now!

Happy birthday Audrey!

~ Vickywoo ~ Leave a comment

Just a quick post to mark Audrey’s first birthday!

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Here she is this morning. Ted and I had the day off whilst she got spoilt at nursery. We went to a photography exhibition and stuffed our faces at Five Guys (in the sunshine in London!).

Sunday was Audrey’s party in the park with friends and family…here she is with Mummy and Daddy…

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Amazing to be one year in. I still wish we knew then what we know now, but I also get what Ted subscribes to… That you have to live through the tough times to appreciate the good. But I do feel like I was robbed of joy. Somehow we need to teach people that DS isn’t something to be screened out of society. Why are we trying to cull them? The screening message just makes you feel like it’s a very bad thing that must be avoided… But I don’t want to dwell on the negative here. Today was Audrey’s 1st birthday and she was surrounded by love and happiness.

She is the best.

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Waving

~ Vickywoo ~ Leave a comment

In the last week or so Audrey’s waving has reached epic proportions! Who knew that this kind of interaction would be so amazing? We are constantly waving at her like nutters and cheering when she waves back!

It’s the best 😊. I can’t seem to add a video of her performing, so here she is just looking lovely for a birthday message for my best friend…

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Changing sides

~ Vickywoo ~ Leave a comment

Since Audrey turned 10 months I have started to find the prospect of another baby less terrifying… Still terrifying, but just not as scary a thought as it was a few months back. So as my mind turned to thoughts of baby number 2, I couldn’t help but wonder… What about the screening for DS? Ted and I discussed and decided there would be no point having the tests second time around, as it will make no difference. However, I then started to wonder about the screening… Why do we screen for Down’s Syndrome?

Is it about the serious health issues associated with DS (heart, bowel etc)? Is it about being prepared for a “different” child? I even considered the possibility that the NHS might want to guide someone down the abortion route in order to save money (would a DS baby need a lot of additional care/medication/operations?).

The fact is I’m only wondering about this now because I have a beautiful baby with DS, who escaped the heart and bowel problems and is doing well and is a joy. Rewind to this time last year and I would have thought it perfectly reasonable to screen for DS… After all, I was someone who had made the declaration that I “couldn’t cope” with a child with DS! This blog post by Hayley of Down’s Side Up explores this area… http://www.downssideup.com/2014/06/the-sugar-coated-disability-abortion-lie.html?m=1

What struck me here (other than the horrible quotes where women were treated badly after deciding to keep their DS diagnosed foetus), was explaining to our children in the future why we screen for DS… Something I thought was perfectly acceptable (to screen for), has now become… Shocking. I guess this is because we (DS parents) could never explain to expectant parents that they will love that child no matter what… It will be ok, you will cope! The coping and the loving will only really kick in when that baby is in your life.

Not sure what the answer is here, the screening is there and a foetus testing positive for DS has a slim chance of survival… All we in the DS community can do is try to spread the message that there is happiness and joy in our family life and take away some of the “fear” if we can. I definitely found huge comfort and positivity in looking at blogs such as Down Side Up and Kelle Hampton’s Enjoying the Small Things when I was coming to terms with Audrey having DS. I was literally thinking “wow, they still eat out/dress well/have fun” – because at the beginning I felt like DS = end of the world. We need to show that it’s not the end, it’s the beginning… The beginning of a different world, but still a very fun/fashionable/foodie one!

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Things Audrey has taught me…

~ Vickywoo ~ Leave a comment

It’s funny when you realise how much you can learn from a life experience. Funny because it seems like such a cheesy cliche, but hey ho…

Audrey has taught me many things by coming into our lives. I guess number 1 would be that I am stronger than I thought I was and can handle more than expected.

If someone had said “You will have a baby with DS”, I would have said “No way, I couldn’t cope!” But the reality is, life throws something unexpected at you, but you just get on with it and cope.

I knew I had a pretty great husband, but Audrey came into our lives and I realised I have an amazing husband. I never really understood the phrase “He’s my rock” until Ted became my rock. From the moment the doctors said “emergency c-section” Ted was everything I needed. He was calm and strong and by my side the whole time. Whilst our minds were filled with confusion and worry over Audrey’s DS, he quite simply said “I just love her” and was there for her from the very beginning. He stayed strong when our world was turned upside down and I it suddenly dawned on me… This is what it’s like to have a “rock”!

She’s also made me realise that perfection isn’t what you think it is… I guess perfection is much like beauty, it’s in the eye of the beholder. She is perfection to us because your baby always will be, no matter what. Ted and I actually discussed before she was born; “Do you think we’ll know if our baby is ugly?” and although I’m pretty confident anyone would agree Audrey is a beauty… I don’t think anyone would ever think their baby was ugly, even if it looked like a potato to everyone else.

The beauty of your baby is unlike anything else in the world and I feel like I know that even more so because the Down’s Syndrome that was all I could see when I first looked at her face, is now something I can barely see. When I look at her now I wonder if other people can tell… when I look at her now I just see our beautiful Audrey.

Getting home

~ Vickywoo ~ Leave a comment

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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Audrey’s story begins…

~ Vickywoo ~ 3 Comments

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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