1 in 200 chances of Downs

My heart goes out to you for this difficult time you are going through and leading up to your wedding. The others are right - it must be so scary and I can only imagine how painful this time has been.

I wanted to add I think you are doing the right thing waiting - Little princess is spot on - 1 in 200 means 199 chances your baby does not have d/s - that is 0.5% chance .However, the chance of something adverse after amino is 1% -double the risk.

I am assuming that if your baby doesn't have other soft signs or markers the odds she is okay is better.

Someone I know told me a story of a lady being told her child had D/s (in 2004) and she decided to terminate at 18weeks - later the aquaintance said it was determined the baby was normal.

I would also tell your family - something like this need sto be shared so they can support you.


I googled this ...

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Pyelectasis is a collection of fluid in the fetal kidneys causing them to dilate. Pyelectasis is also referred to as “renal pelvic dilatation”. It is a relatively common ultrasound finding, seen in approximately 1% of pregnancies, and is more common in male than in female fetuses. In the majority of cases, the fluid in the kidneys drains and does not have a negative effect on the baby.

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Babies with pyelectasis who are chromosomally normal have an increased risk for urologic problems that may require surgery after birth if the collection of fluid in the kidneys increases throughout pregnancy. If the pyelectasis persists, an ultrasound of the newborn kidneys is recommended. Typically, however, pyelectasis disappears by the third trimester of pregnancy and has no negative effect on the baby.

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I will keep you both in my thoughts and [-o<

Thank you all for your love and support. I swear I would not know what to do with you all.

The ONLY two friends I have told (one with kids one without) both said they would do the amnio in my shoes... THat they would want to know. I think that is probably only becusae they can not feel her doing tricks in my tummy. I'm not going to tell anyone else.

I told my Mum & Dad, they said that they know Matt & I are going to be teh best parents and if we had a special needs child that they know we would still be great parents, and that if anyone could do it - we could... so nice to have family support... I hate that they will spend the next 20 weeks worrying like me, but I guess that is what families are for.

Wedding in 9 days - I am looking forward to that.

28 week ultra sound on 6 April at 10am... I will keep you all updated (they may move this thread to Third Trimester by then?)

thank you all

Good luck with your wedding Cee Cee, and look, you are already one week closer to your next scan!!

i know its hard but what your mum and dad said is exactly right! you will be the best parents that your child could wish for!

Friends can offer advice but until they are in your situation they will not know what its like and therefore the decision is completely up to you!

Good luck Cee Cee!!

Im sorry about your news, though do try and remain positive, it cant hurt.

I have heard through a child care course i did about 8 years ago that an early way to detect down syndrome once the baby is born is to look at the folds of their hands. If the fold in the hand is straight across then the child is likely to have down syndrome.

Hi Kel,
Thanks for your post... I was just lying in bed now thinking about the birth, about how I will be looking at her and thinking "is she alright / is she normal" and not being able to tell unless she looks different?
You say:

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If the fold in the hand is straight across then the child is likely to have down syndrome." Do you mean the fold on the inside of the hand (i.e. also know as life line?)

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Hi Cee Cee,

Yes.. if you look at your hand you have 2 lines that kinda run parallel but dont intersect (i think theyre the heart and the head line?).. as ive heard with a down syndrome baby the line goes straight across on the palm of the hand. Ill be checking myself when my baby's born as im not testing for down syndrom.

Ive been reading your posts and i think when they tell you 1 in 200 chance you think oh my gosh thats so low... but think of it the other way around you have a 199 in 200 chance that your baby will be fine.

My brother in law's sister has 4 children. They tested with all 4 and were told that 2 of them were very high risk, im not sure of the percentages but perhaps even higher than yours. They worried throughout the remainder of the pregnancy and both babies were perfectly healthy and without down syndrome. I guess this is a reason why im not testing as i dont want to perhaps worry over something i have no control of and that isnt definate. But with that, try and remain strong and positive if you can, and just think, 199 in 200 is a bigger difference than 1 in 200 ;)

Hi Cee Cee,
I hope you are well. I will reitterate what everyone else has said 1 in 199 chance is great! I have had friends be in the 1 in 18 category & baby does not have d/s.

My very good friend has a daughter with d/s the same age as my DD. D/S was not picked up on any scans etc. She did not have the specific test as at age 17 was not considered to be in a 'risk category'. We knew from birth she had d/s, low set ears, thumbs & sandle gap were all deteched by a pead on delivery. She is the light of everyones lives such a special little fairy!

Take care, have a fabulous wedding day & please let us know how you are getting on!

Hi CeeCee,
I just read your post and I send lots of love and hugs.

The things that these doctors are pointing out are called 'soft markers'. Things that indicate there may be a problem. I was 38 last August and being from a nursing background I have had a lot of experience with babies with 'problems'. This has always made me quite fearful. Working in this area distorts our sense of reality. The reality is most babies are born healthy. Our odds of having healthy children are very very high.
With my last 3 babies I chose to have amniocentesis even though my nuchal fold risk was very very low. I did this because of the fears I held because of my life experiences both professional and personal.
Amniocentesis risk is about 1:200 depending (and that is really important) on the practitioner. Some practitioners have a risk factor as low as 1:300 (mine does). I had no problems during or after the amniocentesis and in 24 hours after reading my FISH report I felt secure in the knowledge my baby was chromosomally okay. From a personal and professional perspective I believe there is a lot of fear around amniocentesis - there is a risk and a couple need to decide if they can cope with that risk.

Some people suggest invasive testing only be done if a couple would choose to let their baby go. Many many women have amniocentesis and choose to continue with their pregnancy. They are able to prepare themselves for the future. Many women choose not to risk invasive testing and that is right for them. This is such a very very personal thing.

I think it has to be said that a very great number of women who have amniocentesis get very good news. I have a personal friend who was given the odds of 1:12 of her little one having a chromosomal disorder. This was also at the 18-20 week morphology scan. Her baby had many of these 'soft markers'. Her and her partner chose to have amniocentesis because they wanted to know what they were dealing with. That is a very personal choice that everyone makes differently. Little Joshy is the most gorgeous, robust, happy little baby with all his chromosomes in place.

Amniocentesis is invasive and there is a risk that is undeniable. The upside is you have an answer with no more worrying. The down side is there is the risk of miscarriage.

Your own risk factor is the same either way. Did you know though that a 38 year old woman's age based risk of down's syndrome is 1:179? So, you have good odds that your little one will be fine. Many many people well tell you stories of women with far far worse odds birthing healthy babies. These 'soft markers' only indicate the possibility of a problem not that there is definitely one. But any news like this is alarming for parents.

I read a post in here from someone that there was someone told there amnio was clear but the baby had a chromosomal problem. The only possible way that could occur is if the incorrect sample was tested. Having worked in this field in the past that is now almost an impossibility. Human error is possible with everything and can never be totally illiminated but the chances of this happening are extraordinarily low. A patient is asked to check their name, date of birth and sign the label which in full sight of the patient is put on the tube of amniotic fluid which has been extracted. It would be very very rare for a false result to be given. Likewise that a woman was suggested to abort her baby and then find it was okay. I am at a loss as to what to say. In a case like that the hospital and doctor would need to be sued within an inch of their lives. However, having worked in this area I just don't know how that could happen. A woman would never (in Australia) be advised to abort her baby on the indicators of a soft marker or a nuchal scan. The definitive results of an amniocentesis would be used and then a couple would need to decide together on what they feel would be the best for them.

I am so sorry for this torment that you are having to deal with. I just wanted to share another side. I will watch closely for your news in the coming weeks.

Lots and lots of love and blessings,
Deb

skyelar & Flowerchild
thanks for your posts. the wedding was wonderful, given all the stress I must confess I did not even want the stupid thing... but I changed my mind on the morning and it was the most perfect day of my life and I loved it.

Flowerchild: thank you for your detailed post. My doctor said that there are 2 types of Downs, with one type not all the cells are affected, so if you do an amnio and it collects the un-affected cells of the type of Downs where not all the cells are abnormal, you could get a fasle negative for Downs. This is rare, but it did happen to one of his patients.

I guess if I could have my time again I would probably do an amnio at 12 weeks. I will get Private Health insurance next time and get the best doctor in the country to do it. I really do not want to live through this again.

I thought I would love being pregnant, I've waited so long - but really I'm so worried that I'm hating it, every night I think "yeah, one more day gone".... such a shame..

The 28 week scan is on 6 April - one month from today. I of course will keep you updated...fingers crossed....
thanks again

Hi Cee Cee great to hear from you & so happy you enjoyed your special day!
Take care & I will have my fingers crossed for a fabulous scan on the 6th!

Cee Cee - Just wanted to let you know I'm thinking of you. I'm an older mother too (38 today actually) so remember being a bit up in the air when having to weigh up how far to go with testing etc.

I'm so sorry that you have experienced all this anxiety and stress at a time that should be happy for you. Have you considered talking with a counsellor a bit? Maybe this has already been offered to you but if not, it might help clarify your feelings about the screening and any further testing you might want to do.

However it turns out, I wish you all the best.

Love,

Mel

Cee-Cee-

You sound exactly like me when you said you were worried about the birth and that you would be looking her over to see if she is ok or not. I felt exactly the same- even to the point that i wanted someone else to look her over and tell me before they gave her to me so that i wouldnt have to do it for myself.

Well its almost time for me, and all i can honestly think about is seeing my beautiful girl and kissing her all over! The Downs thing hardly ever enters my mind most days. I just want my baby, no matter what.

Once you have had the same amount of time to deal with things as i have, im sure you will think differently and will really look forward to the birth.

Take care