A - Z Challenge

Down’s Syndrome Screening: My experience

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This day was the first day I cried during my pregnancy.

I was quite excited to go for our first 3D scan. I heard it was a fantastic way to view our baby’s growth and check that everything was ok. I was referred to this particular clinic by my gynaecologist. I booked a 20 week scan, but my son was only 19 weeks old (yes, I was that excited).

 

We sat in the waiting area for a while. It was overcast and drizzling, but I didn’t mind. The nurse/assistant led us into the doctor’s office. Everything was so high tech and stark white, the floors were white and the walls were white. Even the roof was a mottled white and grey pattern. I lay down on the plush white doctor’s table, stomach exposed. She had a big screen ahead of us and a projector. Mr held my hand as she ran her ultrasound equipment over my belly. Everything seemed completely normal. Baby had a very strong heartbeat, brain and lungs were good. Movement was great. I thought we were A for Away.

 

Then it came to his nose. She said the bridge of his nose was underdeveloped and I stood a 1 in 350 chance of having a child with Down’s syndrome. My head started spinning, her voice became softer and softer until they were completely muted by my thoughts. Down’s syndrome? I’m only 21! What does 1 in 350 mean? What if I’m the 1 in 350 women? I had so many questions running through my mind all at once. Before I knew it the scan was over. She wiped my belly, Mr helped me up and then she pencilled me in for an Amniocentesis without my permission. I told her I’d get back to her on that.

 

We got home; I hardly had time to process things when my gynaecologist called. She told me that she heard my son had the possibility of having Down’s. Then she asked me when I am going through with the Amniocentesis. I mean really! I wasn’t sure I was going to do anything at all. Mr and I haven’t spoken about it yet or anything. She said that the sooner I did so, the better so that I could make a decision on what I was going to do going forward, because my window period for termination was closing. I broke down. Termination? I hadn’t even thought of terminating my baby. I called my Mom and cried some more. I couldn’t believe this was happening to us.

 

Mr Googled and researched Down’s Syndrome (Once a journalist, always a journalist) so that we could make a decision on whether to do the Amnio or not. So 1 out of 350 equates to a 0.002% chance of our child having Down’s Syndrome (That’s not even 1%), but the risk of miscarriage due to an Amnio is about 20% in South Africa. So 20% versus 0.002% is a no brainer. I didn’t do the Amniocentesis, because the risk of miscarriage was too high and we weren’t going to terminate the pregnancy even if he had Down’s Syndrome. We would love him the same regardless!

 

Mr saw something very interesting at that doctor’s office – everyone on the Amnio list had an African, Muslim or Indian surname. Mr is Sepedi and he thought that our son had his flatter nose, which he did. Both of them don’t have much of a bridge in their noses and that’s what triggered the red flag. We found that South African medicine practices are behind too, because the acceptable ratio of Down’s Syndrome in the USA is 1:150, which is more than half the ratio I received.

 

Above all, I wish I was handled with more care. I know I am a patient, but I wish I was allowed some time to make a difficult and possibly life changing decision. I wish that my gynaecologist was kinder towards me and my situation instead of pushing me to do something that I didn’t want to do. I felt like I was just something to make money off of, not a person or a mother with a living being growing inside her.

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Everything worked out in the end, our son was healthy and he inherited his Dad’s fantastic flat nose!

 

Do you have a child with Down’s Syndrome? Have you gone for an Amniocentesis before? Have you had similar results to mine?

Let me know what you think. I’d love to hear from you.

 

Love and Blessings,

Lindsay Sign Off

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34 thoughts on “Down’s Syndrome Screening: My experience

    1. I love that the hospital’s tag line is “our patients come first” (in line for an amnio). Haha. I can laugh about it now, but it was very difficult at the time. I understand that there are women who require an amnio and I admire women who choose that route. I’m glad everything went well too. I was on edge the entire pregnancy after this.

      Liked by 1 person

      1. Me too. I don’t think we’ll go back to that hospital for the same scan. My aunt had the same scan at a different hospital, she was pregnant at 40. She had similar results, but said that the hospital she went to didn’t push her as much as they did with me.

        Liked by 1 person

      1. It’s so great to find someone who was in my position. It is very stressful and it is sad to think that women and parents go through similar feelings every day. Thanks for reading. Have a wonderful day 🙂

        Like

  1. I wonder at what point patients just become numbers and are no longer people? I’m sure the doctor didn’t intentionally mean to be that way but I an only imagine that after years of doing the same thing that it becomes routine even though the patient may be going through it for the first time. In the state that I lived in, genetic testing is a given. I had to sign all kinds of documents stating that I was refusing to do it with both of my girls. At the end of the day, I wasn’t going to love them any less or “terminate” the pregnancy… so what would be the point? From what I understand the tests aren’t yes or no, it’s based on a percentage…so odds are they may or may not have (insert issue here). I encourage everyone to make the decision that is best for them. In our case, I knew I wouldn’t be able to let the numbers go, I’d think about them throughout the whole pregnancy and add unnecessary stress for no reason. I’m thankful that I have my two healthy girls and I told my doctor that whatever it was that life felt I was able to handle, I’d find a way to do so.

    Liked by 1 person

    1. I agree. We came so far in the pregnancy, there was no way that we were going to terminate. That was our choice and we didn’t want to go through with the procedure where we could lose a child who didn’t have Down’s (And he didn’t).

      Liked by 1 person

      1. It wasn’t me, I was a complete wreck. Thank goodness for my partner. He was my rock when this happened. I had all these questions and he said that if our baby had Down’s Syndrome we will cope and everything will work out or we would work through it together. Every child is a gift and a blessing. I am so grateful for him.

        Liked by 1 person

  2. I remember sitting there thinking the same thing as you. You have a 1 in 1,000 chance of this, a 1 in 500 chance of that. Once we broke it down into percentages like you did it didn’t seem so scary. I wish they would present it both ways to everyone so we can fully understand what they are telling us.In the end my daughter did not have Down’s Syndrome but had other health issues that were dealt with. But, the fear from how they speak to you lasted longer than anything else!

    Liked by 2 people

  3. OMG! It must have been so terrifying and horrible for you when you were told something like that, that too when you were expecting to come out all happy…
    Really disappointing this is!

    Great post 🙂

    Liked by 1 person

  4. Lindsay, I personally did not have any downs screening, but what I will say is sadly, we just become the next number in the queue. There is little feeling from the medical doctors/staff . It is all done by the book, you see ‘this’, then this must happen. It is all text book case sort of thing, cold and no feelings. Where is the empathy and the concern from these people to the parents of the unborn child. Sometimes I wonder whether they should have a trained medical staff member that literally has gone through or has a downs baby, to have that person consult the parents..I don’t know, I just think it is so sad the way expectant mothers are treated as in your case.
    Beautiful post by the way. x

    Liked by 1 person

  5. So good that you share this! I have my mid scan on Monday! My 12 week scan showed no nasal bone, it could have been that it wasn’t calcified yet, because my Harmony test came out 1:10000, but I’m still anxious about it. I can feel her moving so much and no she will not be terminated regardless.

    Liked by 1 person

    1. I’m so glad you came across my story. Congratulations! Pregnancy is a nerve-racking time, but everything will work out. My son still has a very short nasal bridge. All the best with your test and I will keep you and your baby in my prayers.

      Like

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