Part 3. 20 week scan

Before I start telling the story of my 20 week scan, I want to tell the story of what happens when I take Wade out in public. Today I went for breakfast at Marios’ in Fitzroy, where I used to work. If you want to know what the world looks like when everyone is smiling and happy….push a pram with Wade in it. Walking along the street with my happy bundle in his blue glasses who makes eye contact with almost everyone he sees, turns complete strangers into a gooey mess. Almost everyone smiles, some people comment, a few ask questions about the glasses, children giggle at him. Trying to walk along or do the shopping usually results in me having a few conversations with complete strangers, which is lovely. I sat in the front window and sat Wade on the bench so he can look out the window. Watching people’s faces light up as they walked past the window and lay eyes on him and smile, makes me realise how many days he brightened, if only for a minute.

There’s a language warning on this one because sometimes “golly gosh darn it” doesn’t convey the gravity of the situation!

The time between my 12 week and 20 week scan was spent mostly searching forums on the Internet trying to find examples of when test results meant nothing. I would swing wildly between positions of being completely at ease with the possibility of the baby having Down Syndrome then completely in denial about it. These things happen to other people and all that.

As time went on, however, I became more and more comfortable with the idea of potentially having a baby with a disability if that’s what was to be. I truly believed that of all the things that could be “wrong” with your baby, Down Syndrome is not the end of the world. From what little I had seen, people with DS seemed happy enough and didn’t appear to live their lives in pain or suffering. I waxed lyrical about what the chances were and what it might mean to us but I think I knew in the back of my mind that I didn’t really have to consider it because it wasn’t going to happen anyway.

I was excited about the 20 week scan and obviously nervous as well. I had come to some kind of peace about the potential risk of DS and I was ready to see my baby again….

But I watched that sonographer like a hawk!

Trying to decipher each movement she made, each measurement she took. I knew that she wasn’t going to tell us anything so I was determined to work it out for myself. I don’t know how I thought I was able to interpret anything she was doing but I was on the hunt for clues!
The 3D scan was amazing. Baby Chicken was hiding behind the cord and it was a bit hard to get a good look at the face but we got the photo and I was wrapt.

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Off we went again. Not as excited as last time but I was pretty sure everything was fine. The baby was so much bigger than last time and was active and strong. No problem…
But I stared at those photos trying to see if I could tell. Does it look like it has Downs? Are those eyes normal? Are the ears in right place? What is a normal baby supposed to look like anyway at 20 weeks? Here I was, happy in my decision to “wait it out” but desperate for clues.
The next day I was looking at the photos again. Just about to put them up on Facebook…. I took another look and wondered again, does it look like it has Downs? Back to google I go! This time I am searching for 3D ultrasound photos of babies with Down Syndrome. I want to compare my photos with theirs. Of course you can never find exactly what you are looking for with these things. Like a crazy woman, I am sitting there pretending to be a doctor, certain that I can tell by comparing other ultrasound photos.

If I am completely honest with myself, I am a control freak. I hate not knowing. I also hate being forced into unnecessary procedures and I hate putting my baby in unnecessary risk, but I hated not knowing!!! I was happy to wait it out but I was desperate to know for sure. I wished that I could be more blasé, more que cera cera, about the whole thing but I couldn’t. So as a result, I spent most of the pregnancy trying to do everything I could to work out whether the baby had DS except the one thing that would tell me for sure….the amnio. Weird right?

While I was sitting there that afternoon, comparing photos on the Internet with my own u/s photos, trying to be Sherlock Holmes, the phone rang…

It was Sharon from the Birth Centre. She had my results from the scan and she had to tell me that it was almost certain that the baby had some type of chromosomal abnormality, most likely DS. It was also uncertain whether the baby would make it at all as it was now slowing in its development and was 2 weeks behind where it was supposed to be.
I don’t remember the words that came out of my mouth. I think I said No or shit or fuck over and over. I listened and I remember that there was still this little part of me that was thinking “but its going to ok right?” I was scared and crying but I was composed. I listened to what she had to say. She told me that the nuchal fold reading was still high (6.5mm), there were two choroid plexus cysts on the brain which was an indicator and the baby was two weeks behind in its development. This combined with the 12 week scan and blood tests all pointed to chromosomal abnormality. I needed to go back and have another scan in 3 weeks again to check on the growth. Again, the doctors were advising an amnio to find out for sure.

I was home alone when she rang and I needed to get off the phone and talk to someone. I told Sharon I would contact the centre and come down to get more information later.
I hung up the phone. And it all came out. I cried like I have never cried before. Curled up on the floor in a ball and wailing.

In one instant,

I realised I was terrified and I didn’t want this at all.
I realised I had known all along.
I realised I had been deluding myself and
I realised that there was absolutely nothing I could do about it

And it all fell out of me in a bawling, babbling mess.

The thoughts and feelings that raced through my mind at that point were overwhelming. Everything you have intellectualised and objectively analysed over weeks, refining and revisiting your opinion about a theoretical situation means NOTHING when the reality is right there in front of you and your heart is screaming…

“I’M NOT OK WITH THIS!”

I cried and cried.
Then, after a while, I stopped.

I was still sad, still heart broken, still wishing it wasn’t so but when I stopped crying, I realised that nothing had changed. I was still pregnant, still had this baby inside me. I felt it more than thought it really. It’s hard to describe because when I thought about the news I had been given, my conscious mind fell apart with tears and grief but somewhere else inside I “felt” ok. It wasn’t a specific thought that I had or realisation that I came to, it was just that when I couldn’t cry any more, I felt ok-ish.

I was home alone as Mick was at work so I rang my sister and my parents. I cried all over again. My sister wanted to drive over to be with me and so did my dad. My family are always the first people I call and have been extraordinarily supportive to me.

While I waited, I sat and spoke to the baby. I used to do this a lot. There were many times throughout my pregnancy, even before any test results that I felt connected to the baby. Whenever I was unsure about what the right path to take was, I would realise that I had already made up my mind and the answer was right. Again, it’s really hard to describe such an intangible concept. I am a skeptic by nature and I don’t always believe what I’m told. Especially when it comes from medical practitioners. Eat this, don’t eat that, don’t lift anything, don’t sleep on your back, blah blah blah. I followed the basic common sense stuff about food but often I would look at a piece of food and think “I’m not going to eat that”. I didn’t really know why but I just listened and didn’t question it. These things happened all the time.

So that afternoon, lying on the couch, fresh with the knowledge that there was most likely something wrong with the baby, I sat and spoke to it.

I said, “Baby, you have to grow.”

The baby was always very active and always felt very strong to me which was one of the reasons I struggled to believe that there was anything wrong. As I had planned to give birth at the Birthing Centre in the Angliss Hospital which is for low risk pregnancies, if there were going to be complications or heart problems with the baby then I wasn’t going to be able to birth there and would need to be transferred to another hospital. I didn’t want that so I told the baby that it had to grow if it wanted to be with the nice midwives and not with the nasty doctors and all their scary machines.
This was on the Wednesday. On the Friday, I was having lunch with a friend of mine. At the end of lunch, we took a photo of us all together. You can see my little pregnant bump in the photo.

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By Sunday however, the bump was bigger….much bigger. I took a photo and couldn’t believe the difference.

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As I say, I am a skeptic and have no answers for this but I can believe in a connection between me and the baby and he must have been listening because when we went back for a follow up scan 3 weeks later, the cysts were gone and he had done 4 weeks worth of growing in 3 weeks. He was now less than a week behind and was on track.

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I definitely grieved during this time. I know now that’s its an important step. I was grieving for the lost idea of what my child would be like. I grieved because there was no more denying it but it forced me to accept the situation and set out towards my “New Normal”

He always finds a way of letting me know everything is going to be ok.

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10 thoughts on “Part 3. 20 week scan

  1. Just wanted to say your little boy is beautiful and I am certain he will grow up a kind wonderful man! Ive always said that children born with Downs Syndrom having nothing wrong with them, instead they are just born without the ‘hate’ gene, they are such kind loving people! ❤

  2. Have you read ‘Expecting Adam’ by Martha Beck? I was very selective about which DS-related books I read during the pregnancy but I loved this one, and she talks a lot about that ‘connection’ she had with Adam. Worth a read if you get a chance x

    • I haven’t heard of it. I’ll check it out. Because Wade is my first, it’s been hard to know whether my feelings are the same as any mother experiences or something else. Would be interesting to read her take on it. BTW, your boy is just ridiculously cute and the article you did is fabulous. I’m new to the blogging world…is it possible to share it? How would I do that?

      • I suppose it depends how you share it. The full online version of the article is available on news.com.au (there’s a link at the base of my DS101 post if you need it) so you could just write your own post and then put a link to the article in it? Or look up ‘press this’ on WordPress as another option x

      • Hardly a blogging expert, but always happy to help out when you need. PS. Thanks – we think N’s pretty cute too, but there’s probably a little parental bias involved there 😉

  3. Hi, Thanks so much for your blog. I’m 32, we’re currently at the 6-month mark, and were told about two months ago that it’s Down Syndrome. I have just been sort of adrift. Anger, frustration, sadness, trying to stay positive and encourage my wife. The last few days I’ve settled into a pretty deep depression. My wife wants to talk about baby names. I don’t even know what to tell her on that. It’s been kicking for awhile, and I haven’t felt it yet. And I just called him “it.” I’m doing that… Don’t know if that’s normal or not. Anyway, thank you for your blog because it’s the first thing I’ve read that was really close to the emotions and feelings that I’ve felt and my wife has described feeling. I’ll comment more as I read more (starting from the beginning.)

    Hope you, Mick, and your little buddy are all doing well.

    -John

    • Thanks for your comments. I’m glad you are enjoying it. It’s a difficult time you are going through. I found it helpful when I realised that I was grieving for the lost idea of perfection. I think it’s hard for the man too because you don’t have that physical connection to the baby but we found it came easily when Wade was born. Be kind to yourself and to each other and give yourself time to grieve.

  4. Pingback: Sharing pregnancy stories when your child has Down syndrome… | Embracing Wade

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