High risk combined screening results: Today was hard, infact hard doesn’t even cover it, it was gut wrenching, heartbreaking and it has completely crushed me.
Apologies if this blog comes out a bit all over the place, it’s all very raw right now and I’m just writing like I would if this was a personal diary rather than structuring it as an article the algorithms agree with.
After what seemed like a positive 12 week dating scan last week, today I got the call every pregnant woman dreads. A voice message to say that I needed to contact the screening department regarding my blood results from the combined screening I had last week. I knew immediately that meant I was high risk of Down’s syndrome, Edwards’ syndrome or Patau’s syndrome.
I called back and when the phone was answered I spoke to the sonograpger that conducted my scan last week (also called Hayley). She said that she would like to book me in for a face to face appointment to discuss my results. I immediately burst into uncontrollable sobbing and begged her to just tell me over the phone rather than making me wait to come in. She checked with her manager who agreed and then she told me that my bloods had come back and my baby has a high risk 1:6 chance of having Down’s syndrome.
In all honesty I don’t really know what was discussed after that it’s all a blur and I just cried down the phone.
Further screening options.
I know that I have been given 3 options going forwards
- Have no tests at all and continue with my pregnancy as I otherwise would – being prepared for the 20 week scan to flag up any abnormalities.
- Take a Non-invasive prenatal test (NIPT), which is also known as cell-free DNA or Harmony test. It involves a maternal blood test, to test the DNA coming from the babies placenta. The positives to this test is that it is non invasive and completely safe for both me and the baby. However it doesn’t give a definitive yes or no answer, and like the combined screening will just give me a probability of risk. It also can take two weeks for the results to come back which would be a completely agonising wait.
- The third option is the only one which gives a definitive answer to whether my baby has Down’s syndrome or not, and the results come back within a couple of days. There are two options which are both invasive and run the risk of bringing on a miscarriage; The Chorionic Villus Sampling (CVS) test, or an amniocentesis. The tests include a very thin needle which is inserted into the abdomen to take a sample of tissue from the placenta or amniotic fluid. Depending on how many weeks pregnant you are will depend on the type of test taken.
There’s no way I could go through my entire pregnancy not knowing either way, it would just make me too anxious and I believe that knowledge is power so option one definitely wouldn’t be the right thing for me to do. Option three runs a risk to the baby so I think it makes sense to start with the blood test and go from there, however I need to think it though. My worry is that if the NIPT did come back as low risk would I believe it enough to be content, or would I want a definite answer and go for the CVS or Amniocentesis anyway. In which case does it make sense to just do it sooner rather than putting myself through more waiting and heartache.
I am not allowing myself yet to think about a positive result and what that would mean. Obviously there are options for women not to continue the pregnancy. Whilst I am thankful that in the U.K. women are still able to make that choice, It’s not a choice I can even begin to even imagine making right now. My heart tells me ending the pregnancy isn’t something I could go through with; but I just don’t know if I have the energy, patience, and time to give to a baby, child and adult that would need so much extra care for my entire life either.
I just don’t know and can’t even begin to process those thoughts right now.
For the time being I need to focus on the short term, and just try and breathe – literally breathe, because right now I feel like I can’t. I need to put one foot in front of the other and get through each day, each moment, one step at a time. I need to arm myself with research and decide in the next 12/24 hours which tests I will take and get on with it.
Tonight I feel broken battered and bruised. I feel like a truck is sitting on my chest. I am struggling to think, and function. After the call I had to take a moment, dust myself off and try to somehow carry on as normal for my other children.
If you’ve read my other pregnancy blogs you know that I’ve always had a strange feeling that all was not well with this pregnancy. I feel like my heart was perhaps being prepared for this result, and the next one to say my baby has infact got Down’s syndrome.
I am just so completely numb right now. Nothing really prepares you for results like these. The guilt is just so overwhelming. Guilt that I am praying my baby does not have Down’s syndrome, guilt for wondering if that is something I am strong enough to deal with, guilt for even considering other options than to continue the pregnancy, guilt for the life my other children would lead should I bring a baby with Down’s syndrome into our family. My chest has been tight since I got that phone call, I am desperate to breathe out, desperate to sleep, just desperate to feel something other than heartache.
NIPT Results.
Two weeks have passed since I decided to take the NIPT. I went into hospital the day after the phone call and was met at the door by one of the kindest, non judgemental and supportive women I have ever come across. I’ve never thought someone was more suited to a job than she was, and I don’t know if she was a midwife or specialises in screening but she was exactly what I needed that day.
She took me into a private room and gave me the space to just cry. We discussed the test options, the pros and cons and she just allowed me to share all my emotions. Once I decided that the NIPT was definitely the right choice for me she walked me round to the antenatal clinic and sat with me whilst I waited to be called in for the test. It was a quick blood test – no different from any other, and once it was done I was free to go home and start waiting.
After what was the longest and most painful 14 days of my entire life the test results came back as low risk. I wasn’t in a position to blog during that time; I hardly slept, woke up having panic attacks, couldn’t think or concentrate on anything. I was filled with guilt for being so heartbroken as a life with Down’s syndrome is still a life & a blessing, however I was struggling to feel that way. I didn’t want to feel like my world had shut down but I did. When the low risk result came back, I didn’t feel the immediate relief and joy I thought I would. I was just numb by this point, I had no feelings at all. I had shut down and completely distanced myself from my pregnancy and everything around me. The entire experience just feels like a blur. I am forever thankful my baby is healthy, & forever guilty I doubted my own strength in caring & loving him / her if the results should have been different.
Antenatal choices and support.
If you are reading this as a mother waiting for your results give yourself some Grace. Allow yourself to feel whatever you may be feeling right now.
Whatever the outcome this experience will stay with you. Don’t suffer alone, reach out for support – in real life or online. My inbox is open. Below are a couple of resources that helped me immensely and that I highly recommend.
Arc: (Antenatal results & choices) https://www.arc-uk.org/
Mumsnet – Antenatal results chat. Forever greatful to the women who held my hand on the board and checked in with me every single day even though they were going through the same pain. https://www.mumsnet.com/talk/antenatal_tests_choices
PADs Facebook group. The mothers and admin in the group were extremely supportive and non judgmental. The groups admin even reached out privately to offer her support, and sent me a book about the realities of raising a with a child with Down’s syndrome. http://facebook.com/groups/415274562687672
I pray now that the rest of my pregnancy is completely uneventful. Whilst right now I don’t feel completely reconnected with it which I’m told is normal, I look forward to being able to putting this behind me and feel the excitement I had a couple of weeks ago for the life growing inside me.
To follow my pregnancy journey please subscribe to the blog and head over to the pregnancy diaries category https://tutusandmud.com/category/pregnancy-diaries/
Disclaimer
This blog was a very personal and raw account of something that I found a completely traumatic experience. The subject of maternal choice is of course extremely divisive and personal to each woman and her circumstance. Please do not use the comments section to debate termination for medical reasons or any other, or to shame anyone who may be considering this as an option!
