Before I take you down this merry path I need you to know two very important points. Firstly, I’m not a medical expert, despite watching years of E.R and Casualty. Much to my dismay it takes years of study, and I don’t mean studying the T.V. Secondly I am not here to judge. I have not walked in your shoes. I’m here to tell you what I did and why, my reasons, my situation.
I also apologise as my memory is slightly hazy so I can give you rough time scales only. Baby brain is alive and well in my head and has been for some time. Now that is medical fact, as far as I’m concerned.
I found out I was pregnant at around 6/7 weeks and was hastily booked in for my first midwife appointment and scan. I was beyond excited although already the cracks in my relationship were beginning to show; I knew I wanted this baby.
I think it was at my first appointment when the midwife offered me pre-natal screening and gave me some leaflets to read through. I read about the two stages of tests. The first a simple screening test or nuchal fold test where an ultrasound measures the amount of fluid at the base of the neck. Babies with Down’s tend to have more fluid than a typical baby. The results are not accurate and will only put you in a low to high-risk category, not a definite answer. The second is either an amniocentesis or chorionic villus sampling (CVS); these are diagnostic tests and carry a risk of miscarriage. An amnio test (the one I was offered) involves taking a sample of fluid from around your baby within the womb. Yikes!
I flicked through the information and signed the form to say no thank you. My thought process was that due to my age (38), I was pretty sure I’d be put at high risk. Being in this category would almost certainly put me under a lot of stress; I already had way too much stress in my life due to personal circumstances. I definitely didn’t need any more. I wanted this little bub; I didn’t want to put it in any danger of miscarriage due to stress or any tests. As far as I was concerned it was wanted no matter what the results would be. My (now ex) partner and I disagreed, to him forewarned is forearmed; to me ignorance was bliss.
I say this as there is a lot of negativity out there associated with Down syndrome, I’d also like to add unnecessarily so. It’s scary! Had I been put at high risk and googled Down syndrome, I would have been petrified. I have no idea what I would have done. So, much as I say nothing would have made a difference, I honestly do not know, ignorance was definitely bliss. I knew very little about Down syndrome, what I did ‘know’ was pretty much a generalised view of adults with Down’s being reliant on carers and needing round the clock care. Being a burden on their carers and society with little hope of employment or any sort of a ‘normal’ life. Crazy! It’s not true, far from it. Yet a lot of information on line and in the media will lead you down this route.
My little man was born with Down Syndrome and he’s perfect. He’s more perfect than anything I could have wished for or dreamt of. My favourite quote sums up how I feel about him perfectly. “And I’d choose you; in a hundred lifetimes, in a hundred worlds, in any version of reality, I’d find you and I’d choose you.”
He has Down Syndrome and I wouldn’t change one wispy hair on his perfect little head.
There is of course, another side to prenatal screening; in my ignorance I did not realise it’s not just Down’s that they test for. There are other conditions, Edwards Syndrome (Trisomy 18) and a variety of heart conditions that can also be detected. Finding out information like this can be vitally important. If your baby is at risk you would be monitored appropriately, you would be directed to a neonatal unit with the specialist care required for whatever condition your baby may have. There are reasons why testing can be important and in no way should anyone be made to feel guilty for having tests. What I struggle to understand is when a baby is terminated due to a certain condition. It’s not perfect so lets erase this one and try again. That hits me hard, probably because without what I know now, it could have been me. And that is scarier than any test result.
My Son, My Elijah, My World