Did you test for Downs?

[Ladypug]

I had my first mw appointment today and she explained at the first scan we have the option to test for Downs. If it comes back high risk then testing becomes quite invasive. She said if we would have the baby with Downs then that would be a potential reason not to test. She also said some people just "feel" low risk or don't want the invasive analysis.

What did everyone here do? Did you test for it or not? X

I think creating life brings with it a flip side that can't be denied or nicely brushed under the carpet, and shouldn't be.

To be fair, having a late in pregnancy termination due to severe abnormalities that are incompatible to life is hardly 'nicely' brushing something under the carpet.

I had no intention of having any testing but NT was done without my consent and came back high. I was left in a horrid situation I was furious that it had been done, deeply worried about the risk of a having a child with a chromosomal abnormality and completely lacking in knowledge of syndromes such as Edwards. I ended up trawling the Internet in tears trying to figure out what the hell to do. I would recommend that you read any info you get given re testing (don't lob it in the recycling like I did) so you are prepared for all eventualities.

Aged 40 my combined test results gave me a risk of 1:1700. However I still opted to have the Harmony as well. Had the tests shown up Edwards or Patau syndromes I would've terminated. Being prepared would've been a good thing I think. A friend had a surprise DS baby shortly before us (despite her combined test results being v low risk) and, although her son is much loved and has brought tremendous joy to her family, it really was a massive shock.

No I didn't as we wouldn't have wanted the follow up invasive tests.

Mind you, my DDs are now 21 and 24 so I'm not sure if tests have changed since then.

I didn't. DD was a result of many years of trying and ISCI treatment. I decided that since I wouldn't terminate and I wouldn't have any of the tests that risked miscarriage, I wanted to enjoy my pregnancy and not worry about it.

If I were lucky enough to get pregnant again, I might consider it as I have to think about the impact on DD, but it's highly unlikely that I would have a termination.

Yes, I had the tests and I terminated my first pregnancy because the amnio came back positive for Downs. We were also told that the scan indicated very severe heart abnormalities and the chances weren't good of making it full term, or that the baby would likely die very young.

I was only in my early twenties and my partner and I knew we couldn't knowingly at that point in our lives, cope with a disabled child. We also saw it as a choice between losing a much-wanted baby then, at a relatively early point in pregnancy, or cope with the likely heartache of losing a baby later on. We chose what was for us, the less painful option.

To answer what some posters have wondered - what would parents who terminated for Downs Syndrome do if they went on to have a child with a disability, one that can't be screened? My DS has autism. It's not life-threatening and it's not severe, but it is challenging. It's not something anyone wants for their child. The answer is that I love and care for him because he is my son.

There is a difference between choosing not to go ahead with a pregnancy because of abnormalities and accepting a child who is here, who has differences. I know, because I've lived it.

No one really even suggested that I have the tests (I was 40) because they knew I'd had 4 previous miscarriages in a row. I think they did look at the nuchal fold and that seemed to be low risk. I carried to term and DS is a healthy ASD boy. I understand both sides in deciding to test or not.

I opted out of the test. I had previously miscarried and didn't want an amnio. What would be the point of half finding out? I would only have worried. I was also fully committed to the pregnancy.

As it turned out, I still had the worry of a potential chromosomal problem when they carried out measurements at my 20 week scan. Turned out to be a false alarm, but I was quite shocked at how much they actually look for in the scans, without me having had any idea about it.

I upset my entire care team by refusing tests. I have a balanced chromomal translocation so was a consultant lead pregnancy. I didn't ask to be I was happy to have my 2 scans and minimum interference. The NHS had other plans understandably after over 10miscarriages.

I refused the amino I was offered and any blood screening, because I knew no matter what I wasn't termenating. I still don't know if DS carried the same translocation (which is harmless, it only affects fertility, and it's not all doom and gloom DS wasn't even planned ) I asked on Thursday for our referral only because of he does have it I have no ice how it affects male fertility.

so in short, no no testing as the outcome would be the same, I'd have carried to term.

You'd have carried to term even if an incompatible with life diagnosis like Edwards or Patau's was given?

Yes I would have carried to term. Just like I sit next to DS from one regression to another and love him with everything.

Hurr1cane you're a superhero

I won't be testing for Down's, I wouldn't terminate and a diagnosis doesn't mean anything by itself when the condition can vary so much in its effects. I guess any associated heart problems would show on the anomaly scan and that's the scariest part.

I had CVS for two pregnancies in my 40s. We wanted to be prepared, as we already had a very disabled child .

I'd just like to say, I'm proud of the way everyone has conducted themselves on this thread, over what is obviously a very emotive subject.

Yes MissAndrist, I would have done because I wouldn't have known about it.

I was prepared to deal with whatever happened.

I had a nuchal fold scan with my last and surprised myself by deciding against an amnio, despite a crap result (I seem to remember 1 in either 100 or 200).

Given that part of the test is age related, I was never going to get a brilliant result, as I was 39.

DH skipped out of the test, as the doctor told him that x football team had as much chance of winning the World Cup, which didn't seem likely to him.

scarednob haven't had time to rtft but I noticed you mentioned going to the Fetal Medicine Centre for the harmony test. I thought I'd mention that last time I was there they were offering a significant discount on the test if you had it done by/at about 10 weeks I think (can't remember exact details), may be worth a look? It's a great place and the staff are so compassionate.

I paid about £500 and had the Harmony test package at the Fetal Medicine Centre. The NHS screening normally consists of the nuchal scan, plus some blood tests which look at hormone levels, plus a risk factor based on age, history, and lifestyle, and would have been very likely to come out as high risk given my age. I didn't want to risk amnio or cvs, both of which carry a risk if miscarriage, unless I was really quite sure of the risk. I also didn't want to have a later termination, and I intended to terminate if Downs, Edwards, or Patou were found.

With Harmony, blood is drawn at 10 weeks and cell free foetal dna is extracted from it. Chromosomal analysis is done on this foetal dna, giving a much more accurate result than the NHS screening. The NHS is currently trialling this method in some parts of London, and it's likely to replace current NHS screening. You will receive results from Harmony 2 weeks after the blood is drawn (by 12 weeks if blood is drawn at 10 weeks) which allows you to terminate quite early if needed.

The Fetal Medicine Centre donates all profits to a research foundation for fetal medicine, and the package I had included a detailed viability scan at 10 weeks, Harmony test, and detailed nuchal scan at 12 weeks. If you would terminate for Downs, or for conditions incompatible with life, and you can afford it, I can't recommend it highly enough.

Fwiw, all my results were extremely low risk and my detailed scan showed absolutely no abnormalities. It has allowed me to actually relax and enjoy my pregnancy, as I feel like now I have taken all sensible precautions and anything that might go wrong now is out of my control and also very unlikely.

I was 38 when pregnant and we chose not to test. For me Downs would not be a reason to terminate. I am pro choice on abortion.

If I had no intention of terminating I would have accepted the NHS screening, but refused amnio or cvs, because children with Chromosomal abnormalities often have complex medical needs. The screening carries no risk, and I would want to give my child the very best chances, and that would mean allowing the delivery team to be prepared for a baby with additional needs.

The Harmony test is fantastic. Far more accurate that the nuchal fold test yet non invasive so no need to worry about mc.

I didn't . I know two families who have a child with Down syndrome, both tested and results negative, and then child diagnosed after birth. So they appear fairly inaccurate anyway.

I would rather carry a child to term and they pass away soon after, than terminate and always wonder if the tests were wrong and could they have survived.