Love Jenuine

As mentioned in my previous post ‘Part 2: when it all became real’ at our 12 week scan we were told the fluid at the back of our baby’s neck (Nuchal translucency), was slightly larger than it should be, and that this was a key indicator for Downs syndrome. Going in to the scan, I was just so excited to see the baby, and of course I wanted to know it was healthy, but being in my twenties, I naively presumed everything would be okay. So I really wasn’t expecting to hear any differently.

The nurse at the scan told us not to be concerned, but advised us get the blood test for Downs syndrome. As far as I understand this blood test checks the hormones that your placenta is producing are at the correct levels. The output of combining the scan and blood results gives you a ratio that your baby will be affected by Downs syndrome. If your ratio is less than 1:150 you are classed as a ‘high-risk’ pregnancy and the NHS provide extra services and options for your pregnancy.

I received a call from the hospital a week after our tests, as soon as the midwife introduced herself, I knew something was up. When she told me the news, I couldn’t hide how upset I was, I was devastated. She explained my tests had resulted in a 1:60 chance of our baby developing Downs syndrome. She explained my hormone levels had been unbalanced, combined with the nuchal translucency being slightly larger than normal, had given us a ‘high-risk’ ratio.

The midwife was extremely helpful and once I got off the phone, I spoke to Rich. I called him and explained exactly what the midwife had said (best I could, as I was still a blubbering mess), I then did the same to my mum.

Once Rich got home, we sat down and went over everything the midwife had told me. I was just so upset, and just kept going over things in my head, questioning ‘why us?’, especially after having a miscarriage, I kept thinking ‘this isn’t meant to be’, ‘I am never going to be able to have a baby’. Rich and I raised the questions of ‘would we keep the baby?’ we had completely different responses, but both with very good reasons, and agreed that there was no point in discussing this unless we really had too. We needed to stay strong for each other.

At this point we decided to keep the news to just our parents. I felt like talking about it, was making it more and more real, and i just wanted to make it go away.

The next day, we spoke to the specialist midwife, she explained the options provided by the NHS;

1. Continue with the pregnancy, and await the arrival of the baby, though the 20 weeks scan may show more markers, but by that point it would be more difficult to terminate the pregnancy. Plus emotionally you are half way through your pregnancy, and I imagined feeling very attached to the baby.

2. Continue with the pregnancy, and at 33 weeks a test could be carried out to check for downs-syndrome, and if the baby becomes distressed, they can deliver, and there is much less risk to the baby and mother – however if you reach this point, you might as well just continue to 40 weeks, and put neither the mother or baby at risk.

3. An Amniocentesis test. This is the only test offered by the NHS. It involves injecting the placenta at 17/18 weeks and taking a sample of the amniotic fluid, which is then tested for a number of conditions, including Downs syndrome. This test has a 1 in 100 risk of miscarriage, but you get your results in 3 days. We were informed if you did miscarry you wouldn’t know until up to 14 days after the test, and you still have to the deliver the baby. The results of this test gave you a definitive yes / no to whether the baby would be affected.

At this point, I couldn’t bear the idea of putting the baby at risk, I felt like I was living a nightmare, and we were would be forced to go with option 3 as there wasn’t any alternatives.  After giving us some time alone to discuss, the midwife returned and told us about a fourth option. She mentioned the word ‘private’, followed by ‘very expensive’. I didn’t care about cost, if there was a better option I wanted to know. She explained the NHS dont normally refer to private clinics, but this new technology meant a non-invasive procedure, 99.9% accurate, but with a longer lead time for your results, and at the cost of £500. We both immediately said yes without discussing it. I was a little annoyed she never mentioned this sooner, but I was just grateful we had a glimmer of hope…The Harmony Test.

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3 responses to “Downs syndrome: Our Options”

  1. Tink Jayne says:

    Wow! That sounds like it was such an emotional ideal. And I imagine it was so difficult having already become attached to him. Really well written x x

    • Jenny says:

      It was a roller coaster, and I wouldn’t wish it on anyone, but I want this and my next post to raise awareness of the private option available, even thought it costs money, you cant put a price on the life of your child. I just feel for those who really cant afford it.

  2. Vicki Hughes says:

    I think most parents would pay to go private, i know we would of in the same situation. Good read jen, well written. Must of been very upsetting going through all that jen. X

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