I believe that knowledge is power. At 40, I had the amnio, which would give me the best genetic look at some of the issues we could be facing because of my age.
And protestations on this board aside, statistics do show that about 90 percent of people who find out about a Down syndrome diagnosis don't continue the pregnancy.
Unlike so many of you, I don't know what I would have done given test results that showed Down Syndrome. But I always knew that I wanted as much information as possible before my child was born.
Edited to add: I wouldn't have bothered with the earlier tests, because they seem so statistically unreliable. That's why I went right for the amnio.
JodiFla...that is because you are one of the few people who are being completely honest. It is very easy for someone to say "oh, of course I would have the baby and love it no matter what"...while that is probably true in the majority of cases....people don't understand how difficult it is to raise a child with special needs....whatever needs they might be. There is alot that comes with having a baby, and even more when they are sick.
My daughter is absolutely the best thing that has happened to ME, but she and her issues have also been the hardest thing I have EVER done in my entire life. As I said before, I have 3 other children. Every time my daughter is sick and in the hospital, I leave those 3 kids home without their mother. Is that fair?? Do we make it work, certainly. But our choice to continue on with our pregnancy wasn't one that just impacted me, my husband and the baby. It also affects all of the family that I have to rely on to take care of my other 3 children so my husband can continue to work to keep the health insurance that we so desperately rely on now. It also affects every single taxpayer in the state of NH who now finances my daughters health care through the Katie Beckett waiver which allows us to care for her at home, rather than put her in an "institution."
While I personally would make the same choice all over again, thats not to say that we haven't struggled tremendously because of it. Our lives are FOREVER changed. I can't work anymore because she needs 24hr care. That in turn leaves my husband working countless hours. It affects our personal relationship in many ways. I am angry because I am "mom, nurse, doctor, advocate, chef, taxi driver, etc." He is angry because he just works all the time and although would like nothing more than to help out in the previously stated situations, he can't. We struggle to pay common household bills due to a lack of a second income and an unmanageable amount of medical expenses. Not just hospital bills, I still have to keep a household running while she is inpatient, but I have to pay 9.00/day for parking, $25.00/day at minimum so I am fed while there, gas back and forth to the hospital that is 100miles RT for appointments etc...My other kids now have to see a counselor because they are so afraid of their baby sister dying, or "Mom are you sure your going to get us off the bus today?? You promise" Then 3 o'clock rolls around and I'm not here, but there Grammie is...and they won't see mom for 2wks because we are back in the hospital...and no, they can't visit becasue of the new visiting policies due to swine flu.
This is not me "complaining" this is me explaining all of the things that having a "sick child" does to everyone in the family. I haven't even commented on all the pain that a 3yr old has dealt with in her life. The same 3yr old who is petrified of flashlights because that's what the nurses use in the middle of the night before they stick you with needles, or the same 3yr old who thinks of gloves and syringes as "toys"...and on and on... Not to mention the hours and hours spent on physical, occupational and speech therapy. The tears that start when you pull into the parking lot and she realizes where she is. This is just a start.
Now, there are many, many, many blessings that Brigitte has bestowed on us. Despite all of the heartache, my husband and I know that if we can get through this, we can get through anything. That old saying "that which doesn't break us, only makes us stronger"....very true. She has taught us that it isn't because there are DSi's and Ipods under the Christmas Tree, that we got all we wanted for Christmas, rather the fact that we were able to wake up and all 6 of us be under the same roof on Christmas is the biggest gift anyone could have received. Brigitte has a way of bringing family members who hadn't spoken in years, back together. She can walk into a room and EVERYONE is smiling. She has taught my other 3 children not to point and stare at the little boy in the wheelchair, rather to go and ask him if he wants to play.
So, in my mind this is not a question of whether you should/shouldn't have a child with special needs. It is a matter of preparing yourself for a lifetime commitent. One that will not only include the "normal" baby, kid, teen stuff...but all of that PLUS some. Are you a strong enough person emotionally to handle it? Is your husband/partner? Are your other children? Is it fair to the baby that you are bringing into this world? Now, we are supposed to be this very up and coming PC country, everyone love each other kind of place.....guess what?? Thats just not true. This world is still very bias. I am treated differently because we have "medicaid"...(its a supplemental insurance, we do have primary healthcare as well)...my daughter is stared/pointed at (not by kids, but parents)...my older kids don't get invited to parties/playdates because "umm, we might catch something"....other kids ask them "is your sister a retard?" Brigitte doesn't get invited to playdates or birthday parties either, lets face it, rolling her in, in her adaptive stroller and having to manipulate central lines, tube feeds etc. doesn't make you want to "bust out the balloons"...
On the other hand, the friends that I have managed to keep, or have made...now those are women that you can call a friend. We bend over backwards for each other. We don't talk behind each others back about what the other is wearing, in fact most days we celebrate if we are able to squeeze in a shower sometime during the day....if we're lucky, might even get to "do" our hair instead of throwing it up in a clip!!
So, while the rest of you sit around and point fingers at someone else for trying to make a decision on whether or not they should first test to see if their child is healthy or not...I empathize with that woman. She is doing what is right for her. Now, the question comes when you do find out that something is wrong. What do you do? There is no right or wrong answer. As PP said, 90% of people choose to not continue on with the pregnancy. I don't fault them for that. Maybe they just weren't strong enough. Don't say they should put the baby up for adoption...go to
www.reecesrainbow.com People don't adopt these babies. Don't start on me about "well, I do" You know that you are in the minority and are to be applauded for that....but we all know that most people who are looking into adoption aren't actively seeking out children with special needs unless they have been impacted by a sibling, or another child.
The point is that whatever decision you make whether it is to test or not to test...to continue along with a pregnancy or not is completely individual. We all have different opinons on it...and we all have a right to those opinions...that is why we live in America, right?? If you want someone else to tell you what to do, then go live somewhere else.
Sorry if I was on my "soapbox"!! It just always seems that nobody is willing to talk about this stuff. I have a date with Mickey Mouse Clubhouse...and I should probably empty out my inbox, because I am SURE that there is going to be plenty said about this.
that I didn't have the test run while I was pregnant. I would have rather been prepared to care for her ahead of time vs. finding out after delivery (I'm an OCD planner and want to know all of my options).
which couldn't have been further from the truth. The conversation with the doctor was so shocking to me and took my entire family by surprise.
her comment to me and my family about having to deal with unwed, uneducated drugged up teenage mothers really pissed my mom off especially considering I was 23, married, not an addict, and college educated from a top ranking school 
). When the complications hit, I HAD to trust my ob. She was making decisions not only about my life but also about my child's. Some of those decisions were NOT going to be my choice because we were at times were the choice would have been to save my life and he would have little to no chance of survival or we both die.
That was a very thought provoking and honest post. I really admire you.
