That seems to be the question I'm hearing a lot since we announced our pregnancy. It's also a hot topic on all those pregnancy message boards you see. As I've mentioned in previous posts, it's something like 90% of babies diagnosed with Down syndrome prenatally are aborted. This is truly heartbreaking to me. So when I saw the title of a post on my message board the other day, I cringed and considered not reading it. Instead, I prepared myself for the worst and figured that I would set out to at least try to educate these women about how wonderful having a child with Down syndrome is. And that they are truly more alike than different. I was shocked to see that with the exception of one or two responses everyone said that having a child with Down syndrome would not have an impact on their pregnancy. Of course, I was heartbroken at the mere mention of termination, but mostly it brought tears to my eyes at how many women realize that all children have value, and how wonderful children with an extra chromosome are.
I respect each woman's decision to follow through with prenatal testing or not. It's a personal decision that's only right for each family. Many of you probably know that we opted out f all screenings with Kennedy, and that we were surprised by her diagnosis when she was born. It was a very emotional time for us, and at first I regretted that we did not know. Not because it would have changed the outcome for us, but it would have helped to be prepared mentally. We knew nothing about Down syndrome, local resources, etc. and there was a lot of fear. Once my midwife mentioned that had we known prenatally I would have been risked out of their care, I was immediately glad that we didn't know. As much as part of me would like to be prepared this time, just to avoid the shock factor if we were to have another child with Down syndrome, it's not a risk I'm willing to take. We will once again be opting out of all screenings. Yesterday at our cardiology appointment the physician brought up the question of a fetal echocardiogram to rule out any heart defects. After discussing with her, this is also something we will be opting out of. Kennedy's defect is associated with Down syndrome, and Dr. Nardell is confident that if Kennedy didn't have Ds, she also probably wouldn't have had the AV Canal Defect. Because small defects, that often resolve before birth are quite common, and would risk me out of my midwives care, the cardiologist is in agreement with me, that the echo isn't a risk that we need to take. If there are any concerns after the baby is born, or if I want that peace of mind, she'll be happy to see him/her and do an echo.
This is the best decision for our family. I've already found it to be somewhat unpopular with people have asked. I've seen a lot of shocked faces when we explain that we won't be doing any testing or that we didn't have genetic counseling before conceiving again. Kennedy is a blessing to us and our families and our little ray of sunshine. We are far more prepared for having a child with Down syndrome now than we were with Kennedy, and if that's God's plan for us once again, then we gladly accept.
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Such a personal personal decision. That people even ask astounds me. That someone would ask and then feel entitled to express their disapproval seems downright wrong. I liked the post a week or two ago on Babycenter that said that their response when asked about testing for the next pregnancy is, "Why do you ask?" But thanks for sharing your decision. I for one, think it's awesome, even though I know that my opinion is irrelevant. To get the care you want is a compelling reason. I delivered with a midwife at home and know that that never would have happened if we had known about Cora's Dx prenatally. Bravo Jennifer for standing your ground and being brave enough to let us all know how you feel.
ReplyDeleteThanks Leah! We are planning a home birth this time around after using the birth center last time. I'm really looking forward to it! I adore my midwives and cannot imagine doing it any other way!
ReplyDeletePeople always have an opinion until it happens to them. Do what is right for your family, as you always have. My mom has my sister with ds, a complete surprise, then went on the have my sister and I. We did have testing this time around but only to be prepared. Life works out the way it is supposed to!
ReplyDeleteI think it's awesome, Jennifer, that you are not testing. I think you are so cool. This is a really great post and I enjoyed reading it. We knew prenatally with our son, and I am not sure it was the best thing. It was good that we had time to learn and prepare, but it was too long. There was so much time I spent being sad and I would have enjoyed my pregnancy more if I didn't know. I don't know what we would do if there is a next time, because now I will worry anyway whereas before I maybe would not have. I am so excited for your pregnancy!
ReplyDeleteI always say, I wish I would have found out a week before Hailey was born. It would have given me a chance to go through the shock and grief before she was born. I would have been a little prepared and we could have celebrated her birth instead of it being overshadowed by the diagnosis. But oh well....hindsight is always 20/20. I was able to enjoy my pregnancy (we are planning on Hailey being our last) without the stress of knowing.
ReplyDeleteI, too, am amazed at random comments and questions from people. It really is such a personal decision. I have a friend who is pregnant now. It is her first pregnancy since her 2nd child was born with DS. She made the same decision as you but gets the same questions and opinions.
Yes, Kennedy is a blessing and with everything...you make the decision that is right for your family!
A home birth! How cool! Can't wait to hear/read about it. =)
ReplyDeleteWe opted out of testing too, and in hindsight I'm glad, because we would have been "risked" out of a homebirth if we had know. Levia, thankfully, didn't need immediate attention, so I had a couple days to absorb the news before we started in with all the Dr's appointments.
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