Are you pregnant, or hoping to be in the future?
Do you already know if you are going to go ahead with the screening?
We are due our second baby in a few weeks, and so had to give the topic of screening some real thought recently. I thought I would put together a blog post to go through some of the questions that we asked ourselves when working out if we would want to go ahead with screening this time around, and our experience with screening last time when I was pregnant with Oriana.
If you are going to go ahead with the screening, have you determined what you want to do with that information?
I don’t think everyone necessarily realises that the initial screening just gives a percentage; a chance. It isn’t definite or a yes/no situation. You would require further screening for that which isn’t usually offered on the NHS if you come back as having a test result with a low chance. Just for information, I think that the chance I was given for Oriana was something like 1/3600, and after that it was never mentioned again - no follow up tests. Ours was a postnatal diagnosis and in this post I will explore whether that was a good thing or not!
I do have some friends and family who have told me they decided not to go ahead with the screening, as it wouldn’t have made any difference to their decision anyway and is just a percentage - as we have proven, you can still have a baby with a DS diagnosis even after being told your specific pregnancy has a very low chance! Equally, I know some people wanted to go ahead with the screening so they felt more informed and hoped there was less chance of them being caught off guard later on.
Is it best to receive a Down Syndrome diagnosis during pregnancy, or after?
People have asked me if I thought it would be better to get the DS diagnosis for a baby during the pregnancy or after birth. In truth I think there are positives for either…
Whilst my husband and I wouldn't have made any different decisions if we had found out about her diagnosis before birth, I think it would have given me more time to adjust. I had a very fast and shocking birth, and so to have further shock piled on top of this 10 hours later led to a very traumatic time (you can read more about our experience in this blog post). I think I was still coming to terms with that experience for a long time. It meant I had to process grief, fear and shock whilst in significant physical pain and with hormones all over the place. Being able to find out during the pregnancy would have allowed me to imagine a more accurate version of our future, prepare myself emotionally whilst I was feeling less vulnerable, and start researching and speaking to other mums of babies with DS.
However I think there is a lot to be said for receiving the diagnosis when your beautiful baby is already in your arms - I was comforted and reassured that my baby was still amazing in every way, and that I would love her just as much as any other baby I may have given birth to. I could physically see her to have reassurance that she was healthy and perfect. I imagine it must be very hard to get the diagnosis when your baby is still so unknown and all those worries are potentially going around your head.
I also think your personality plays a large part in what would suit you;
I don’t deal well with change
I am not someone who enjoys spontaneity!
I love to research topics and be informed, I am definitely a ‘knowledge is power’ kind of person!
I was the kind of person who did my homework on the day I was given it, and not the night before it was due
However, if you are a slightly more ‘go with the flow’ type of person, I can imagine too much information too far in advance could cause anxiety and potentially stop you enjoying living in the moment.
Below I have made a list of some of the pros and cons of both scenarios….
Pros for finding out DURING a pregnancy:
Time to prepare and research; look for support groups and forums on social media and in your local community, focus on receiving comfort and encouragement from family and friends whilst you have time to focus on yourself and before your needs can become overlooked amongst all the health checks that the baby will have, time to realign your expectations of your child’s life and particularly what the first few weeks and months will look like whilst you will have multiple appointments to attend.
Cons for finding out DURING a pregnancy:
Could escalate anxiety and stress during pregnancy
Could mean you are in a position where you are asked to consider whether continuing with the pregnancy is viable (I had some friends who were asked this at almost every scan and appointment, despite making their wishes very clear when they first got the results).
Pros for finding out afterwards:
No pressure to terminate like some of my friends had; the baby is already here and has made it through the pregnancy.
You can physically hold them and take reassurance from seeing them.
Cons for finding out afterwards:
Can be a lot to process when trying to recover from birth / in pain / already dealing with a big hormone drop
You may initially feel like you have been thrown head first into a world where you are out of your depth - appointments, additional medical checks, therapies etc.
Ultimately, whether you have any screening done and what type of screening you have is a very personal decision. The right thing to do for you will probably be dependent on your personality and how you handle the information you will be given.
With our second pregnancy, we decided to continue with the standard testing offered by the NHS, even though it did little to prepare us for Oriana’s diagnosis. We were told that if the results came back with a higher than normal chance of having a child with one of the diagnosis that the test screens for, that we would be offered a NIPT test (these are non-invasive tests that have a much higher accuracy rating, but cost around £300 outside of the NHS). However, on this occasion our results came back low again (very similar to the chance we were given with Oriana’s pregnancy). We were happy to leave the screening there and not continue with any further checks, as the screening only looks for a few very specific diagnoses. There are many other things that the test can’t screen for, and so additional tests would only offer a very small part of information on what the future might hold for us and our next baby.
A diagnosis hasn’t defined Oriana’s life, and any potential diagnosis for our other baby wouldn’t either.
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