Is there any benefit to knowing?

A place for moms and moms-to-be with special needs children to find support.

Moderators: B Michaelson, southernbelle, jessm, 1daysoon, reapage, Honey Bunny, unaffected, maddy, TrebleLily

Is there any benefit to knowing?

Postby Lou-anne » Mon Aug 17, 2009 9:34 am

Hi!

I am 38 & know that when I eventually go to the midwife she will offer me a 'triple test' to screen for Downs & other problems. With DD who was conceived when I was 35 (BFP 2 days after 36th bday) I flatly refused any tests as I had discussed it with my friend who was due at same time & 2yrs older than me & we decided age would make us high risk so it was pointess.

This time I am wondering if there are any benefits to us or the baby to be had from knowing about any problems in advance, I ABSOLUTELY would NOT terminate my pregnancy unless they said the baby was so badly damaged it would not live & would suffer until it left us.

Should I consider tests or not??
Me 38 DH 36
DD 2 yrs
Furbaby Cairn 7 yrs

Image

Image
Lou-anne
Angel
Angel
 
Posts: 425
Joined: Wed Nov 01, 2006 1:00 am

Postby betafish25 » Mon Aug 17, 2009 2:39 pm

Hi! I just had an amnio and had to weigh the same question in my mind. I too would not terminate but it came down to this:
1. WOuld I rather know now and prepare for what is to come or would I rather know when the baby is born.

For me, I needed to know for my own peace of mind and to better prepare the drs for when my baby arrives..

Here is my suggestion.. If you know you will not terminate then wait until your 20wk u/s. If it shows no signs of problems then you can go stress free until you deliver. U/s do not catch everything, so even normal u/s can result in babies with chromosomal issues.

If you have the tests done, like an NT scan and AFP, they will come back elevated just b/c of your age.. But according to the drs, the NT scan where they measure nuchleal fold is the most significant marker for downs, that test in conjunction with 20 wk u/s should give you the best results of non invasive testing..

Again,
Just my opinion and this is really a personal topic in which everyone has different feelings.

Wishing you the best
User avatar
betafish25
Hot Mama
Hot Mama
 
Posts: 211
Joined: Sat Jan 10, 2009 1:00 am

Postby PixieB » Tue Aug 18, 2009 10:13 pm

Personally, if knowing wouldn't affect your decision either way, you may be better off not buying yourself the stress if it comes back positive. I don't have the elevated risk but regardless, my choice is the same. With my first pregnancy we had an early scan thanks to a bleed, so I felt no need for the NT u/s at all (especially given it wouldn't change our choice). With this pregnancy we got the NT test done, but at 26 weeks I haven't bothered to call my doc for the full test results.

Having had a pregnancy that was loaded with complications the first time around, well of all the things that can go wrong, if it's only really downes and spina bifida that are likely to be possibly diagnosed from the NT scan...

Gah, not articulating this well. If there's a problem, it can probably be found at the 20w u/s if it's enough to affect how your baby needs to be born.
Knowing a mum who went through her whole pregnancy where the scans showed something wrong. Her experience was horrid, first u/s and the first thing the sonographer says is "There's something wrong with this baby." Every u/s they'd be getting stress over something not being right, to the point where they were being booked in for terminations. And each termination time they'd decide to hold off a little bit longer. Her baby boy came out utterly perfect, the closest to any sort of delay we saw was that he didn't get his first teeth until he was 11 months old. Yet the repeated scans and stress of 'something being wrong' robbed her of any joy in her pregnancy.

Think about how you would respond to the news. It's devastating. It'd be harder to adapt with a newborn, but certainly not impossible. Would you spend the whole pregnancy fretting yourself silly and reading every worst case scenario? Or would you be a realistic researcher? The reality of having a child with special needs is hard, it does take a huge philosophy change in how you view parenting, but it doesn't stop you loving your child. Whatever happens, humans are phenomenally adaptable. You would adjust, in time, to whatever circumstances are thrown at you.
Talia Grace: born Friday 13th of July, 2007, at 27w4d gestation, 700g/1.5lbs. Nursed for 4 years
and Violet Joy: born Thursday 19th, VBAC waterbirth, 39w2d, 3.35kg/7lbs 6oz, still a booby monster, just shared it with her big sister for 18 months.
http://pics.livejournal.com/littlebutto ... y/0000scpq
Image
User avatar
PixieB
Girlfriend
Girlfriend
 
Posts: 1730
Joined: Sat Jan 27, 2007 1:00 am
Location: Australia

Postby Merdy » Wed Aug 19, 2009 5:58 pm

I refused all tests too. I was 35 when I conceived. The only thing my dr. mentioned was if something was wrong with the baby, our hospital would not be equipped to deal with some specialized situations and that the baby would do better at another hospital. At the 20 week u/s everything looked great. I'm glad I didn't do anything!
Meredith (38 )
Breast fed for 21 months!
ImageImage

Image
IVF Baby
Tucker William born 7-25-08
User avatar
Merdy
Girlfriend
Girlfriend
 
Posts: 1085
Joined: Thu Nov 29, 2007 1:00 am
Location: North Carolina

Postby JLT » Thu Aug 20, 2009 8:45 pm

I'm just throwing in my opinion - I think you should do what you feel would make your pregnancy easier. I refused the tests and told DH that if he really wanted to do it, I would, but otherwise, NO. I was 26 and DH was 30 and we had no risk factors to look for. Our son was born with a very rare congenital heart defect - we had no idea until 3 days after he was born - but we are so lucky - because things could be a lot worse. It wasn't anything that could have been detected by my regular ob/gyn. It took us completely by surprise - but I discovered how quickly you adapt to anything. My opinion, after all we've been through, is that you'll handle what's thrown at you - no matter what - and worrying about things that are not definite throughout your pregnancy will only make it that much more stressful. But, that's just my opinion - I know many people need to know and I completely understand that aspect of the decision as well.
ME 28
DH 31
DS 1 - Born with a congenital heart defect - Shone's Complex
First heart surgery @ 19 days old
Next cardiologist appt 01.13.11
Image

ImageImageImage
User avatar
JLT
Angel
Angel
 
Posts: 604
Joined: Sat Jan 26, 2008 1:00 am

Postby mrsjoh » Fri Aug 21, 2009 7:50 am

this is just my opinion-

going what we went thru- I am very happy Iknew as much as I did. The pregnancy wasn't about me glowing and feeling the joy of a baby developing in me and all that jazz, it was to grow and nurture my lo. As a mom I have a responsibility to care for my baby as best as I can. Being a parent is stressful, it always is, deal with it. It is not just down syndrome, there are many things that can come up with these u/s and tests. We found out about our sons severe heart defects and his craniosynostosis. I was able to research learn, ask dr's questions and be that much involved in my childs care.

We are pretty unique, I am sure yes most pregnancies turn out fine. What is best for me? Well it isn't about me, it is what is best for this baby that I am bringing into this world. I am in a different mom club and I am proud of it. I get alot of how do you handle it? I could never do that... and I just don't understand, when people have babies, are you just in it for the good times?
Jasper born Nov 25, 2008-Feb 23, 2010 www.jaspersheart.com
Image
Image
[url=http://www.TickerFactory.com/]
Image
User avatar
mrsjoh
Star Member
Star Member
 
Posts: 362
Joined: Tue Mar 11, 2008 12:00 am

Postby manynums » Fri Aug 21, 2009 9:16 am

my daughter has spina bifida. we flatly refused all testing and found out on the 22 week ultrasound. thost 16 weeks were hard, but invaluable for preparing ourselves for this child's arrival.

also, her birth was a c-section, we had a high-risk OB, and all doctors/NICU staff were ready when she arrived. if we had not known, her outcome may not have been as good as it has been.

GL!
Breastfeeding, babywearing, cloth diapering WOHM. Married to my HS sweetheart & best friend. Proud mama to my two chicklets.

Image Image
User avatar
manynums
Girlfriend
Girlfriend
 
Posts: 4076
Joined: Mon Sep 24, 2007 12:00 am

Postby mamalynn » Fri Aug 21, 2009 11:13 am

manynums wrote:my daughter has spina bifida. we flatly refused all testing and found out on the 22 week ultrasound. thost 16 weeks were hard, but invaluable for preparing ourselves for this child's arrival.

also, her birth was a c-section, we had a high-risk OB, and all doctors/NICU staff were ready when she arrived. if we had not known, her outcome may not have been as good as it has been.

GL!


i am a strong believer in knowing what to expect. even though i might have been worried, i was able to enjoy my pregnancy be absolutely excited to meet my guy. like manynums, i too had a c-sec and a team ready.
michelle 41, dh 44,
pj 5 diagnosed with down syndrome & av canal defect of the heart (repaired 2007)
Image
PhotoEffects-635011925132850000 by milybr, on Flickr
Image
Repeat losses & MTHFR
Image
User avatar
mamalynn
Girlfriend
Girlfriend
 
Posts: 2027
Joined: Thu Aug 10, 2006 12:00 am

Postby Lou-anne » Tue Sep 01, 2009 7:56 am

Thank you all so much for our thoughts & sorry I have been so long in replying but I haven't had the PC out in a while.

I think, having read your replies, that I would now only consider the tests if I didn't think the hospital could cope with a special case baby. My local hospital is only a District General but has a very good reputation and we have 2 large city hospitals within a 30-45 min drive.

I know what it is like to have a bit of a shock in the delivery room as my daughter was born with a club foot & it was missed on the 20 wk scan but the midwifes thought we knew about it so just left us with her with no idea what was going on - it was 24hrs before someone explained the condition & treatment.

I think we will wait on the 20wk scan & just take what God gives us come the day of it's arrival. I feel priviledged to have played an enormous part in my daughters physical development & it has made us so close, I know we will cope with whatever comes.

Thank you all again,

Louise
Me 38 DH 36
DD 2 yrs
Furbaby Cairn 7 yrs

Image

Image
Lou-anne
Angel
Angel
 
Posts: 425
Joined: Wed Nov 01, 2006 1:00 am

Postby ZiggyGirl » Fri Sep 04, 2009 6:08 am

+1 to manynums. Sweet pea has spina bifida. I refused the blood tests, which tend to have frequent false positives (especially since they aren't really +/-, but more of a "you have a higher than average risk that this is a pregnancy with problems"). At our 18 week ultrasound, the doctor saw an abnormality with the fluid level in his brain, so she basically stopped and sent me to the high risk OB. They had a better ultrasound machine and more experience diagnosing problems rather than just recognizing normals, and they diagnosed his spina bifida. I am grateful that we knew at that point because it meant we could sort of prepare for the upheaval that would happen at and after his birth, and that we could schedule the c-section that spared a lot of his nerves from damage that would happen with labor.

If I was to get pregnant again, I would likely do the triple or quad screen simply because my risk level of having another baby with a neural tube defect is significantly higher than average after having one. Like you, I would never consider an abortion, but with a higher than normal risk, I wouldn't be able to enjoy the pregnancy until I knew for certain whether the baby was healthy or not.
User avatar
ZiggyGirl
Girlfriend
Girlfriend
 
Posts: 2700
Joined: Sun Aug 13, 2006 12:00 am


Return to Special Needs Babies

cron