down syndrome

[kelly-mum-2-be]

WASN'T SURE WHERE TO POST THIS TOPIC... i'VE JUST HAD MY BLOODS BACK AND THERE IS A 1 IN 50 CHANCE THAT MY BABY COULD HAVE DOWN SYNDROME WHICH IS VERY HIGH RISK.. I AM REALLY WORRIED AND DON'T KNOW WHAT TO DO FOR THE BEST. I WOULD LIKE TO HEAR YOUR VIEWS..

 

[Rachael]

Hiya Kelly

I'm sorry to read your bloods have come back high risk for Downs, pregnancies are worrysome enough without this added worry for you..(Hugs)

It's important to remember at this point that around 5% of normal pregnancies will have test results that are considered "abnormal", even when the baby is actually healthy. So basically your results coming back 1:50 do not mean that your baby definitely has downs. For this reason it is important not to make any decisions about your pregnancy based only on the AFP blood test. A positive AFP screening result only indicates that the pregnancy is at higher risk than originally believed and that additional, more definitive testing such as amniocentesis should be considered.

I think you should talk to your Midwife or Doctor about more conclusive tests, that way you can make an informed decision about your next steps.

Wishing you all the very best - Really hope all this worry turns out to be over nothing.

 

[emilia]

Hi Kelly

Sorry! You'll be worrying yourself so much now, but Racheal had a good point.
If this result is solely based on a AFP test, than there are other avenues to follow. I am over 35 and declined the AFP test after I read up about it. It carries very high positive negative result. It is therefor only 60% accurate. You can follow it up with a amniosentesis or request a detailed scan. There is a small risk with an amnio, but none with a scan. They will be able to pick up ALL indicators of Downs with the scan i.e lenght of baby's nose bone, circumference of head, lenght of femus bone (upper arm and upper leg bones - short bones are indicator of downs), etc.
Read up about downs as much as possible before you see your GP or midwife again. Be strong and insist on what YOU want. It's your body and your baby!!!
What age are you? Please let me know!
Good luck and be positive
xx

 

[kelly-mum-2-be]

Thanks for all your advice.. I am 19yrs old and i am on my own thats why i'm so worried.... I have thought about the amnio tests but don't like the fact that you can miscary through having it done so i don't think i will be having that done.. I have an appointment with my doctor on monday so i will talk things through with him... I think i would still keep the baby and try my best but with me being young aswell i'm not sure.. I will keep you updated x x x x x x x

 

[emilia]

Hello again Kelly
I wish you all the luck in the world for tomorrow! I have to say that I'm rather surprised that at your age the odds are so high. It gives me more indication to the fact that this may well be a positive negative result. I suppose it does include many of your personal factors, ie. whether there are chromosomal abnormalities in your family, whether your smoke and your weight and age.
Your GP or midwife should be able to give you the right advice. Don't let them patronise you because of your age. Read up about it and be sure of what you want. I promise you you'll be just fine. Even get 2nd opinion if need be.
I really hope that you have family to support you in this big worry! I'll be thinking of you and will be looking out for your reply in the next couple of days.
GOOD LUCK!!!!!!!
Emilia xxx

 

The risk or misscarrying fromm amnio is only about half a percent - very low in fact. I am scared of having to have one done if it comes to it but if you think you may terminate the pregnancy if the baby is down's - then the test is worth doing. If you know you will keep your baby either way, then you don't have to have the test. All test's are up to you hun.

Good luck and thinking of you xxx

 

[boo boo]

Sorry to hear ur news kelly.
I declined the down's test because either way i would carry on with the pregnancy so didnt feel the need to put myself tro more blood tests.
And wen the doctor told me that further tests would cause a 1 percent (i know it aint much) risk of miscarriage i def didnt see the point cos even if my results came back with a high result i wud not risk findin out for certain.

Hope everythin is ok, and keep us all update, thinking of u.

bec x x

 

[kelly-mum-2-be]

it's me again.. well i went to the midwife who made me an apointment with the cnsultant at the hospital and i went yesterday.. I decided to go ahead with the amniocentesis test which by the way was very nerve wracking and uncomfortable...I will find out in a couple of days, i decided it was for the best but even if the baby does have downsyndrome i will still keep him/her... apparently it was higher risk vbecause of my age nothing to do with genes... x x x x

 

Let us know how you get on sweetie - thinking of you and I know you must be going out of your mind xx

By the way - I have been told by my m/w to expect a higher count too as I have had a lot of bleeding. Apparently if you bleed early on then it can make the result come back higher. I'm 19 too. best of luck xx

 

[petchy]

kelly, how hard this must be for you... i know several people with downs, and just wanted to let you know that they all seem to be living fulfilling lives. as you have decided to keep the baby regardless, i just want to tell you about a couple of lovely people i know who have downs syndrome.

the first person i knew to have downs, is my scoolfriend's older brother. he is quite severely affected, is hard to understand vocally and cannot live on his own without supervision. but he is such a loving and affectionate person. he can be very demanding and his mother has had to fight hard to get the best for him, i won't deny that. but he is accepted by the community, in fact i think he has tought people the importance of tolerance and love. at school everyone would do their best to include him in activities, and this goes on now he's in his late 20s. i don't think he has a less fulfilling life than any other person.

i also know a little girl who is 10. she seems to have a milder form of downs, and is also a very affectionate person. she is in a "normal" (i hate to use that word!) class at school, and with extra lessons and help she manages to keep up with her peers. she reads and writes, and can formulate herself very well. i believe when she grows up, she will be able to cope living on her own with minimum supervision, and lead a life very similar to you and me.

"normal" is a relative term. what is normal anyway? a baby with downs will be as loved as a baby without downs, and will bring you a lot of love, joy and happiness. if you find out that your baby has downs syndrome, i would advise you to get in touch with other parents of children with downs and build a network where you can get advice. perhaps also see if you can meet some people who have downs, and learn about the syndrome and how it affects the person. it's a harsh world - people are prejudiced of things/situations they are not accustomed to, but being different is not bad. be open about things, let people ask questions - that way they have no reason to be judgemental.

sorry to rant on... hope the results come back fine for you, but in any case just fight for the best for your baby - downs or no downs!

 

[kelly-mum-2-be]

Hi again.. well i have the first lot of results back and they are clear but still have to wait about another week for the rest of the results.... But glad the first ones have come back fine. Thank you for all your support and views x x x x

 

[Rachael]

Hiya Kelly

So pleased to read your first batch of tests have come back with good results.

Will have everything crossed for the next lot!

Let us know how you get on.