Post # 1
So DH, SIL and I were disucssing this over the weekend during a long car ride and seeing the post by Anewmommatobe (http://boards.weddingbee.com/topic/first-trimester-screening-downs-test) prompted my to pose our discussion here to the Hive.
If you completed some kind of fetal screening / quad test / etc, were given abnormal results that led to further testing, and got confirmation that the child you were carrying would have Downs syndrome, Edwards syndrome, spina bifida or some other birth defect, would you terminate the pregnancy? If not, why do you choose to go about having the screenings if their outcome won’t affect your decision to carry a child to term? Is this something that you and your SO have discussed for when you choose to expand your families?
Post # 3
This is so difficult. If I terminated that’d mean that in the back of my mind that I truly believe that they (those that have those diseases) are unfit to even exist and I don’t think I could do that. I believe everyone has a chance to live. And I’m one of those that think that “what if the tests were wrong?”
EDIT: Also, those tests can be pre-cautionary. In case you need to treat something in utero or immediately after birth, so yes, I would have those tests. Plus if I’d like to know if my kid could die, I’d like to know so that I can appreciate the time we have even if it’s just inside me.
Post # 4
I’m not there yet, so I’m not 100% sure what my husband and I would decide to do. But even if we determined we wouldn’t terminate the pregnancy, I would still get the screening so that we could prepare ourselves for the outcome. it would give me the opportunity to read up what my child might have (Down syndrome, etc) and how we can give our child the best life.
I also think that the type of defect might play a role- as some are completely debilitating, while others are much more manageable and provide a better quality of life.
Post # 5
We did the first screen and the AFP. Everything came out fine. I’m really glad we did the first screen, because that’s where we found out it was twins.
But in retrospect, I’m not sure why I did them. I would definitely not have terminated. If I do get pregnant again, I think I would probably opt out of any screenings. It does seem to to cause needless worry in a lot of cases.
Post # 6
We did not have any type of fetal screening done. We had the basic first “dating” ultrasound, then another about 20 weeks. We woud not terminate the pregnancy regardless of the outcome had we had the testing. I can see how many people would have the testing regardless of their stance on termination, many people like to be prepared, if there is a serious issue that may need treatment after birth. My OB said in her practice it is 50/50. About 50% have the testing and about 50% dont.
Post # 7
We had the Downs test and some others, but it wouldn’t have made a different in keeping the baby. I prayed the baby was okay (he/she is, thank God) but I wasn’t going to terminate.
Post # 8
When we are expecting, we will do the tests and will not terminate the pregnancy, no matter what. I would want the tests only to be able to prepare myself if there were going to be complications.
Post # 9
We discussed this and it was a very difficult discussion for us.
I will not get an abortion no matter what happens, it is too much against my principles and I couldn’t live with myself.. But DH does not feel capable of raising a child that would have great disabilities. That leaves us in a tough spot with few options, but we sorted it out with a few scenarios.
However, given our family history, my age and physical condition, the risks are very small to start with.
Also, the first screening gives us only odds, and if the risks exist, the subsequent screening have risks of miscarriage – I wouldn’t want to risk losing a baby for the sake of testing.
If the results came back positive, I would spend the rest of my pregnancy very stressed out and this would do nothing to help baby.
We decided not to test. DH understands that abortion is not an option and risking a stress filled pregnancy for results that are not certain is not worth it for us. Our child will be the perfect version of himself, and if there are problems we’ll deal with them as they come.
Post # 10
We already knew I was a carrier for a disorder, so we always knew I would have to have a CVS or amnio with each pregnancy. Would we have terminated if the results were bad? It’s really hard to say. What we were looking at, 90% of the babies don’t make it to term, and of those that do, 90% die in the hospital… it really doesn’t compare to Down’s or spina bifida. We spent a lot of time talking about it beforehand, and for something mild, like Down’s, we wouldn’t have terminated– no way. But something like we were screening for… we talked a lot before, and just felt like we couldn’t make that decision until we were actually faced with it. It’s just too big of a decision to not factor in the emotions at the time. Talking about it in the abstract just doesn’t work for us, for something like this.
If it won’t make a difference, why screen? Well, we weren’t sure what we would do, but if we decided not to terminate, there would be a lot of expectations to temper– “Well, baby probably won’t be able to swallow, so will have a feeding tube all his/her life, so I don’t need any tips on breastfeeding, but thanks.” I mean, telling everyone at the get-go what is going to make my baby a little different would give people time to adjust and be joyful for what we can hope for, and be a little sensitive around what we won’t have.
And those that mention SB– with spina bifida, what I’ve read most recently is that the children with it who have surgeries to fix the issue WHILE IN UTERO do better than the children who have surgeries to fix it after birth. Amazing, right? So I’d want to know so I can give my kid the best chance at normal life.
Post # 11
Yes I had it for two reason. Primarily I did because if it was Downs or something similar, I think it would be better to prepare (mentally, emotionally and practically – eg work and child care plan) for having a special needs child if that is what we were to have even though I would carry it to term. And there are other conditions which could be fixed in utero or would make the fetus not able to survive – and honestly, I would rather not carry a baby to term knowing that it had no chance of survival.
Post # 12
Now that some of you have shared your views (thank you for that!), I’ll share DH’s and my thoughts.
DH and I agree that if we found out through fetal screening and tests that the child we were carrying would be born with severe disabilities, we would most likely terminate the pregnancy. It would probably be the hardest decision I’d ever make in my life and I’d probably need depression/anxiety meds to get through the aftermath and grief, but ultimately I feel like it would be the best decision.
Our thought is that at some point, you have to think of not just your unborn child and their potential quality of life, but also the quality of life of DH and I along with any of our other (future) children. Raising a child with severe disabilities would prevent us for providing many other things for our other children due to the additional costs and time requirements of a severely disabled child. It would also never allow DH and I the chance to retire; we’d be supporting and caring for our child 100% until the day we died. Factoring in the quality of life changes for the rest of our family as a result of having a severly disabled child makes preventing that situation, if we can, seem like the best (although extremely difficult) choice.
That said, we obviously both understand that these screenings can’t find everything or that something could happen during birth that leads to a severe disability or that the child could be involved in an accident at some point that leaves them disabled. And at that point, yes, we’d do everything we could to love and support and provide for that child, no matter what. But if we could avoid being put in that situation, we would.
Post # 13
@Mrs.KMM: I asked this question a while back when I was trying to decide whether or not to have it. (http://boards.weddingbee.com/topic/quad-screen)
I wanted to have it done for two reasons:
1) It was covered by our insurance
2) To make the most informed decision
Our results were normal so I can’t say now if we would have done further testing but I feel like the screening tests are good even if you don’t do further testing because at least it lets you know if there’s a potential the baby could have a certain disorder.
Personally even if I were a person who knew 100% I wouldn’t terminate a pregnancy I think having the extra information would be helpful in preparing yourself to care for a child with special needs.
Post # 14
I’m not sure if we will get it done. We are getting up there in age and higher risk for some of the disorders. It would have to be a decision once we found out. I think we would both lean towards termination, but not having gone through it before, I can’t say for sure. I have worked with lots of children with disorders and some cases are so hard, especially for the parents. They always look so tired but so wonderful at what they do.
Post # 15
DH and I have discussed this before, that if we ever decided to have kids, we would get tested. If something showed up, we both lean towards termination.