High risk of Down Syndrome

Would you keep the pregnancy if you know the results are positive for Down Syndrome, at 17 weeks ? Had my nuchal translucency check together with a blood test to measure the two hormones (free HCG and PAPP-A), and it returned to a VERY high risk results. Doctor recommended further to do NIPT (non-invasive prenatal blood test) for confirmation, which mentioned that is 99% accuracy. Results will be in 2 weeks, and I’ve been a bundle of stress and anxiety. Discussion with husband are inconclusive - we aren’t sure what’s our decision going to be following that, if the results are positive. Mentally stressed & exhausted at this point. ***Update 1*** Thank you everyone for the positive response, appreciate your thoughts and sharing. To share, current concern is that if the result is positive for DS, and we decide to keep the baby; Best case scenario, the child is healthy and able to be care for themselves and live a full independent life. On the other hand, DS children are known for common health concerns like heart defects, hearing and vision issues - and if they require long term care, what would happen if we as parents don’t outlive them ? What happens then, and who will take care of them ? Alrernatively, if the result is positive for DS, and we decide NOT to keep the baby. We aren’t sure if at 17/18/19 weeks of pregnancy, is it worth the risk for abortion ? And if we are willing to live with the fact that we ended the life of a foetus that we have seen grow bigger with full human features & limbs, and hearing their heartbeat up to that point. Would we be able handle the guilt & mental stress ?

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I feel you and understand the stress both of you are facing. Allow me to share our experience, which is substantial long. My wife went alone (the only appointment I didn't go with her, seems like destined) for scan on her 20th weeks pregnancy by another doctor and the doctor didn't say any abnormality. When I read the result at night, it appeared to me something amiss. Since the doctor didn't say anything, we trust that nothing is wrong. When we went on the 23rd weeks 4 days appointment with the gynaecologist, who just back from 4 weeks vacation, she jumped from her seat when she saw the result. We were stunned and knew something really bad. She asked did the doctor who did the scan alerted us and she was furious we were not told. She told us there were 2 white spots on the baby's heart and the baby may have severe health issue (or can't live long) after birth. We have to decide to terminate before 24th weeks(2 days to decide). She gave us 5 renowned paediatric cardiologist names to choose to seek opinion. We were perplexed and let her arranged the earliest appointment and whoever the specialist. We went to consult the paediatric cardiologist the next morning at 9am. While waiting for the in-depth scan and analysis result, we decided to keep the baby and accept whatever we have to face. Another reason was I didn't want to endanger my wife's life as the bump was big. When the result was out, the cardiologist told us 80% of the chances the baby will be fine. After our child was born, we brought her to the cardiologist for check as advised by him. He told us no abnormality except only one spot on her heart. Another follow up was done to confirm she is healthy and able to attend her PE lessons. To date, she is normal and running around. I am sorry l couldn't suggest what you should do as the stress you will be facing is colossal. Hope your baby is fine and don't bother what others say for the decision you will make. 🌈💪

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Super Mum

Hi dear, thank you for sharing.. You’re going through something very difficult right now, and there’s no easy answer. Personally, I would keep the baby, but there would be many adjustments and sacrifices my husband and I would have to make. I would read up extensively on how to raise a child with Downs Syndrome, I would join the parent support group (Downs Syndrome Association), and follow up closely to see if my baby has some associated medical conditions associated with Downs, so I know what to expect after birth and whether my baby would need surgery or other medical care as a baby. It’s not an easy journey at all, but I would do whatever I can for my baby. I can only imagine how difficult these 2 weeks are going to be for you, in waiting and trying to make a decision. Big hug, dear. Please let me know if you need a listening ear, and if you’re comfortable, letting me know how things go. You can contact me at [email protected].

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As someone who works with children with special needs, it is something you have to think about and consider for your whole lifetime. Whether you have the time and money and other resources such as capacity to care for a special needs child and to be patient and love him or her for his or her life and that means when you are 60 or 70 or 80 u might still need to be caring for your child at worse case scenario. Social support is also very important like family who is understanding and willing to help and support.

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For my husband, he is very certain that he will abort the baby if there is any abnormalities. He feels that the baby will have a hard life even if born. Even though I will be very sad I agree with him and also know that my finances and mental health will not be able to cope. I think it really depends on urself and ur husband.

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Usually the initial test has a higher false positive and this is why some mummies did NIPT directly which has higher accuracy. Relax yourself for the time being till results day as you may be facing what most mummies experienced also - Did FTS with negative results but when did NIPT during 2nd time, it's a low risk

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My friend did not know her baby has downs syndrome until he was born. Only find out after genetic testing after born 3 days. They were very sad and took a few weeks to accept it. But now they are sending him to classes and therapy and everyone loves the baby.