Dangers of the Down’s syndrome screening test

I have a stash of blog posts half written in my drafts folder. Some will never get finished. This particular post was started a few days after I gave birth to Chloe 15 weeks ago. I think it’s quite an important post and so I eventually managed to finish thanks to a bit of encouragement after reading a post about the diagnosis of disability during pregnancy from one of my favourite bloggers over at Motherhood Journeys

During my first pregnancy with Izzy I was told about the screening test for Down’s syndrome, it was hardly explained and just mentioned briefly by my midwife as though it were a routine test that everybody has. I had the test, a simple blood test at about 16wks and promptly forgot about it. A week or so later I had a letter saying my results had come back as approximately 1 in 100,000 so low risk. In this pregnancy again the test was mentioned as part of the blood tests/scans etc that are taken as normal and again I had the test at 16weeks and once again it went immediately out of my mind. A few days after the test I received a call from the hospital, the midwife who called firstly asked if I was at home (she called my mobile) and if somebody was with me. At the time I was in the garden watching Izzy and Andrew play. Instantly my barriers were up and I felt sick with worry. She explained that my screening test results had come back and I had a very high chance of giving birth to a baby with Down’s syndrome. I will be honest and admit that my first reaction was to burst out crying. My pregnancy had been awful up until this point with weekly bleeds and scans and I just felt I couldn’t take anymore. They asked us to come and see the consultant the following day. I spent the next few hours crying and talking to my mum and Andrew feeling as thought the world was on my shoulders. By the evening we both felt a bit more with it after the initial shock and chatted about what would happen the following day – we both said without even discussing it that an amniocentesis wasn’t an option for us – I’m so glad we were on the same page.

On arrival at the hospital we were given leaflets, one explaining all about what Down’s syndrome is and the other advising of the amniocentesis procedure. The consultant took us into what I call a”bad news” room.. A very calm room with pretty sofas and sunset images on the walls – probably the nicest room I’ve seen in my local hospital. He explained the results in a very calm kind manner and offered us an amnio that very day. We declined and after a bit more chat we left to come home.

I can see how easy it would be to just say yes and find out for sure but for us the risks of anything going wrong as a result of the procedure were too high (even at just 1 in 100) and we knew that we wouldn’t terminate if it was DS so for us it wasn’t an option.

This was probably an easier decision for me than for some as having been involved in a respite care programme with my family I had a lot of contact with children who had DS and I knew if it happened it wouldn’t be the end of the world just the beginning of a different one.

Here is some info taken from the NHS site on what an Amniocentesis is:

Amniocentesis is usually carried out during weeks 15-20 of pregnancy. A needle is used to extract a sample of amniotic fluid, the fluid that surrounds the foetus (the developing baby) in the womb (uterus). Amniotic fluid contains cells shed from the foetus that can be examined and tested for a number of conditions.
Read more about how amniocentesis is performed.
Chorionic villus sampling (CVS) is an alternative diagnostic test that can be carried out during weeks 10 to 13 of pregnancy.

Diagnostic tests, such as amniocentesis, are usually only offered to women when there is a significant risk their baby will develop a serious condition or abnormality.
This is because the procedure is quite invasive (involves going into the body) and has a small associated risk of miscarriage (the loss of the pregnancy). This risk is estimated to be 1 in 100.

I know some people would choose to do the amnio and that is their decision, it’s a very personal decision to make and I wouldn’t say it was wrong to do it at all but I do feel the test is offered too freely at times. The midwife who called me to pass on my results almost seemed to assume we would be having it and spoke to me even as if I was receiving life threatening news. Whilst I know that it’s not something you would choose for your child in most cases your child would still lead a very full, very happy life.

One thing which did worry me was the possibility of heart problems if our child was born with Down’s syndrome – I felt I could cope with a child with a disability but a child who may be ill, in pain or die at an early age is what scared me and every time we had fetal monitoring whenever I had a bleed there were problems with her heart rate. I had to put this out of my mind as much as possible and just get on with the pregnancy.

I am not planning on having anymore children but if I did I wouldn’t have the blood screening again. Perhaps it shouldn’t be offered but something you can request if you want it instead? After all how many of us would even think about this issue if it wasn’t offered?

Even with all the tests and scans we have there is no way of knowing for sure if your child will be healthy and ok until they are born. There could any number of health issues or problems but all you can do is look after yourself in pregnancy and hope all is fine.

Downs Syndrome doesn’t have to be bad news.

For lots and lots info and advice on DS please visit Downs Side Up an absolutely amazing blog written by Hayley Goleniowska a Mum whose daughter Natty was born with Down’s syndrome and who is on a mission to make people understand that life with DS can be wonderful.