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A Bit Down

18 Sep

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The last few days, I have been feeling a bit down .

Finding out about a pregnancy five months into the gestation has proven somewhat of a chore so far. First, I missed all the required checks that are to be done at 12 weeks. Second, I missed all the required checks that are to be done at 20 weeks. Third, I have been wrongly advised about Down Syndrome screening by my hospital.

The first of the Down Syndrome screening is carried out between 11 and 14 weeks. This is the Nuchal scan when the build up of fluid at the back of the baby’s neck is measured. This test offers a 94% accuracy rate.

The second Down Syndrome screening is offered at 20 weeks via a simple blood test. This picks up the baby’s chromosomes through your blood but only offers a 60% accuracy rate.

Depending on the results of either of the above, you can go home happy knowing that the chance of delivering a baby with Downs is small, or, you will be offered an Amniocentesis test. This is the most intrusive and requires a slim needle through the stomach and into the womb to extract a sample of the fluid from the baby’s sack. The chromosomes in the fluid are tested and although invasive, this gives you the best result. However, if done earlier in the pregnancy it can cause miscarriage. The usual cut off for this is 20 weeks.

When I was pregnant with Bambina I didn’t endure any of this and perhaps quite ignorantly on my part, I didn’t do much research given that Bambina’s nuchal tests results were incredibly low risk.

Three weeks ago when I had my first, emergency, scan at 21 weeks and 2 days, I was told by the sonographer that I would do the blood test screening at my next visit.  I didn’t have any reason for concern at that point.

Two weeks went by and the time arrived for the next scan. On Thursday last week I was told that I had been misinformed and in fact, I had missed the national cut off for the blood test screening. I was horrified. Did this mean that I had to go through the next three months not knowing whether I am carrying a child with Down Syndrome? Why on earth didn’t the sonographer spot that I was on borrowed time but went ahead and booked me in for a bloody test two weeks past the deadline?

The Italian and I had obviously discussed our options.  Woman in their forties, late forties, give birth to bouncing healthy babies all the time.  But, we were not sure that our lives could afford looking after a child with Downs. But what was the alternative? Termination? Adoption?

A flurry of questions ensued: What if it is? How severe might it be? How do you find a child minder? Are there any? Would it face a life of constant investigation? Would the italian have to give up his job to look after it? What impact would it have on Bambina? Is that fair? What if something happened to us, what would happen to the child then? Surely we couldn’t ask an elderly grandparent to take the burden? “Burden”. Is that how we would feel, as parents, that our child was a burden?

The obvious reality is that many people with Down Syndrome grow into healthy, fun, fit children and progress into adulthood with independence. The average life expectancy is actually 50.  Some work and study, some live on their own. However, some need constant attention. Some have huge behavioral and health problems.

The sonographer advised me that the cut off for the blood test was at 21 weeks 6 days. That meant that I had only a four day window in which to do it. A four day window that the previous sonographer two weeks prior had failed to notice. A life long critical decision had been taken out of my hands and forced upon me in the blink of an eye.

I cried. I sat down. I cried. How could someone be so careless? I enquired about Amniocentesis and was told that an appointment would be booked for me to speak to a consultant.

I went home. I cried. Once I had wiped away the tears, I called Bupa to confirm the deadlines for the tests to be done privately.  However, all private hospitals are bound by the same national guidelines as the NHS.  However, my private consultant told me that according to the national NHS guideline, the cut off for the blood test is 20 weeks whilst the cut off for amniocentesis is 22 weeks. I had in fact missed everything!!  The original sonographer was wrong on two counts.

I spoke to Marie Stopes, the British Pregnancy Advisory Service (BPAS) and Spire Health Care, another private company.  All confirmed that at 23 weeks and 2 days there was nothing more I could do but hope for the best.

Eventually, after several heated and tearful phone calls from me to my hospital, I finally got to see the consultant on Friday morning. She reassured me that according to the scan and foetal measurements, everything looked fine but that she obviously couldn’t offer that as a true medical diagnosis “and anyway, the blood test is only 60% accurate”, she said. That would have been 60% more peace of mind that I would have had if they had not have taken the choice of having the blood test away from me!!

She continued, “We will not offer amniocentesis at this stage as the risk of damaging an otherwise healthy child by forcing pre-term labour far out ways the risk of a child being born with Downs. However, if at 32 weeks you are still dissatisfied we can carry out the amnio then and if you so wish, we can carry out a termination”.

Ok. After carrying a child for eight months, feeling it kick, move, breathe, hiccup, you would carry out a termination if I so wished?? Is that even legal?? Who on earth agrees to that? At 32 weeks, even now at 24 weeks, the decision has been made for me because your STUPID, incompetent staff didn’t do their jobs properly!!  How can I even consider anything else now but sit back and pray that God has gifted me with a healthy child?

I battled and fought and finally got an appointment next week with a Downs specialist from Kings College. She will check my scans and measurements and compare that to those of a Down foetus.  Again, this wont be a medical diagnosis but purely to set my mind at rest, as best as can be under these circumstances.

Apparently Down Syndrome can also be detected by a scan as Downs children do not have a nasal bone at this stage, the base of the neck is thicker and organs may appear displaced.

Speaking to the consultant won’t change anything but it may help me feel a bit more reassured, it may help me chill out a bit for the next three months and try to enjoy being pregnant with our second child. All I can literally do now is wait, hope and pray that this was all a big storm in a tea cup.

So yeah, you could say, I’ve been feeling a bit down.

Contacts:

Marie Stopes – 0044 845 300 8090

BPAS – 0044 845 30 40 30

Spire Health Care – 0044 208 950 9090

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14 Comments

Posted by on September 18, 2012 in London

 

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14 responses to “A Bit Down

  1. womaximum

    September 18, 2012 at 1:02 pm

    My mum was 47 when I was born, she didn’t know until she was 6 months pregnant, had no tests, so hopefully all ok for you too.

     
    • Tea&Biscotti

      September 18, 2012 at 4:30 pm

      Wow 47! I’m sure I’m panicking unnecessarily and hoping it will all be ok but if not, we’ll cross that bridge if we get to it.
      Thanks for your comment & for visiting the blog.. x

       
  2. mummyglitzer

    September 18, 2012 at 4:23 pm

    I will keep everything crossed for you lovely. Xx

     
    • Tea&Biscotti

      September 18, 2012 at 4:28 pm

      Ah thank you, hopefully it will all be fine. x

       
  3. dutchgoesitalian

    September 19, 2012 at 9:04 am

    Can immagine your state of mind. Especially because a stupid fault of someone not doing their job properly. I’m therefore happy for you taht you get an appointment with a Downs specialist. Keep my fingers crossed and hope that all will turn out just fine. Try to stay positive even though it’s hard!! Letizia

     
    • Tea&Biscotti

      September 19, 2012 at 9:06 am

      Ah thank you so much letizia, that’s really sweet of you. I’m hoping it will be a fuss about nothing and everything will turn out just fine. 🙂 x

       
  4. sammi

    September 19, 2012 at 4:36 pm

    I don’t know if it helps at all, but we did have all the testing done in time and knowing in advance that our child was to have special needs wasn’t easy at all. Looking back, i wouldn’t have done the amnio, I would have been able to relax a bit more throughout my pregnancy not having all the extra specialists hover over me about something they couldn’t change. I guess we have differing opinions about knowing vs not knowing…but I’m sure everything is going to be well with your little one! xxx

     
    • Tea&Biscotti

      September 20, 2012 at 9:31 am

      Sorry to hear your story but Im sure you’re all well and adjusted now (I hope). its a fine line isnt, knowing or not knowing. I think my bigger issue is more the control of it, or lack of in my case. Im usually good in a crisis and I dont know its me making this into a crisis when actually, everything is fine. I guess time will tell for me.
      Thank you for your comment and thanks for visitng the blog. Best wishes to you and your family. x

       
  5. khloeee

    September 22, 2012 at 10:29 am

    Hello, I’ve just been reading through your recent posts and updating myself on the news of your surpise!

    I completely get that you don’t feel very in control. It must be very hard to get to grips with a pregnancy when you find out about it so late in the game. Although we found out about him quite early on, Arlo was unplanned and as a result, throughout my pregnancy I had massive issues with not feeling in control. I think it’s good to realise that and work through it rather than act like everything is fine. It’s only anectodal, but I also wanted to add that my mum only found out she was pregnant with me when she was 5 months gone.

    On the down’s screening – You were totally justified to kick up a fuss about it! Regardless of what the parents’ feelings are on raising a child with down’s, it could be beneficial to know that a baby has down’s so their birth can be well planned for in the event of heart issues or any other complications that could affect labour and birth. Really bad that they were so unprofessional with checking cut-off dates, etc.

     
    • Tea&Biscotti

      September 22, 2012 at 9:02 pm

      Thanks for your lovely comment! I think the not knowing was the biggest issue for me. The planning for every eventuality is a way of getting the control back I suppose. Now that Ive met the consultant and confirmed that everything should be ok, it kind of makes my worrying seem like a bit of a drama-queen moment. Women out there go through the same thing, and worse, every day.
      Still, I’m glad I didnt just sit back and wait, I’d have gone insane!

       
  6. tracie p

    October 22, 2012 at 4:36 pm

    I did not realize how long it’s been since I checked in, I didn’t know you were pregnant! Sorry you had to go through somuch worry and stress:( congratulations, you’re baby will be healthy And happy!!

     
    • Tea&Biscotti

      October 22, 2012 at 7:45 pm

      Aw thanks so much! To be honest I haven’t been blogging that much recently as there aren’t enough hours in the day.
      Hope alls good with you & the little one.
      Xx

       

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