Family Forum: Genetic Testing for Kids

Genetic testing for kids is gaining popularity, which side are you on?

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The Family Forum is designed for moms, dads, grandparents, aunts, uncles and caregivers all to share ideas on topics, questions and ideas involving families in our community. Let's get the discussion going with this week's topic:

What are your feelings on the recent rise in genetic testing on children? Is this beneficial or do the risks outweight the rewards?

All are encouraged to share their thoughts in the comment section below.

Cheryl Donnelly May 04, 2011 at 06:23 PM
This is a very personal topic for me, as I have had very sick babies. With my first pregnancy in 2003 I chose not to do the AFP and genetic tests done. I had heard from many that there were so many false positives, etc. I was young and wasn't fully informed on the subject and let what I heard from others make my decision for me. I didn't even know what a false positive was at the time. At my Level 2 sonogram we found out that our son had Anencephaly, his brain had not developed and he would not survive. We were devastated...... If we had done the testing it wold not have changed the outcome but I would have known a few weeks earlier. After the experience with my first pregnancy I became very well informed on genetic testing. We met with genetic counselors and even though his diagnosis was not considered genetic I needed to have all of the information in my future pregnancies. I had a healthy son and then lighting struck twice in my third pregnancy. I had the AFP test done and it came back at 18 weeks for 1 in 10 for T-18. We went in immediately for the amnio and the test confirmed the baby had passed. Further testing confirmed that the baby did not have T-18, but obviously something was wrong with the baby since he did not survive. The test picked up something we will just never know what it was.
Cheryl Donnelly May 04, 2011 at 06:25 PM
I share my history here to inform others why testing for some of us is so important. After suffering a loss many moms need the peace of mind knowing the baby they are carrying is healthy. With testing comes many decisions, and every decision is personal. I have had heard many women say they do not test because they would not do anything with the information. I have learned from years of being involved in support groups and discussions about this topic that until someone walks in the shoes of a mom with a sick child they will never know the true answer to that question. But of course, for those that do not test that is also a very personal decision.
Kelly Campanella May 04, 2011 at 09:18 PM
Cheryl thank you for sharing your personal journey. As you state it is personal to the ones involved but I think talking about it will help others when faced with these decisions. My husband and I come from backgrounds where family members (including husband's brother) have been diagnosed with diseases or syndromes that could have been deemed genetic. So it was recommended with my second pregnancy in 2003 that we meet with a genetic counselor. We opted with that pregnancy and my last in 2005 not too. For us it would not have made a difference, but the bigger issue was fear-fear of knowing and carrying this child for 9mths. When I was pregnant with my oldest in 1995 at my 5 month checkup, which included a sonogram the Doctor advised that it appeared that the baby had fluid on his/her brain and that I would need to get a second sonogram at the hospital. He explained that if this was the case I could go into labor as normal but the baby would not survive very long outside the womb. It turned out ten days later that my son was fine and that what was picked up on the sonogram was nothing more than some blurry lines. As it turns out my youngest has autism and a number of other issues. None of which would have been picked up in the testing (I believe). We are happy with the decision we made for our family. We do have family members who have opted to find out and I support them. This is a very personal decision.
Cheryl Donnelly May 04, 2011 at 09:37 PM
Kelly, I agree that discussing the topic and sharing my story opens others to what it is like for those of us that have had to face these horrible decisions. That is why I tell my story openly, to help people understand why genetic testing is so important for moms and dads to be.
Lisa May 04, 2011 at 09:39 PM
I too believe in genetic testing if there is a reason. We have a 2 year that we adopted from Taiwan. Our pediatrician was concerned about her growth, and referred us to an Endocrinologist.. One of the tests that he did was a genetic test to make sure she didn't have any underlying abnormalities. Thankfully she did not but we were glad that we had her tested. If there had been a genetic reason for her growth issues then we could find a way to treat the problem or to know what would lay ahead. I definately see the validity of testing children, especially if there is a concern or a family history of a disorder that would help in an early diagnosis or peace of mind.
Kelly Campanella May 04, 2011 at 09:57 PM
Cheryl, thank you for doing so. I imagine it is difficult at times but am glad that you do so-so that you can help other families facing these tough decisions.
Rosetta Goddard May 04, 2011 at 11:27 PM
I chose to have an amnio with both my sons (I was younger than 35 with my first but other tests came back elevated s o it was recommend.) He was and is fine medically. I chose to have an amnio with my last pregnancy because I was 37 at the time. His amnio came back normal as well. It is a personal choice for every family but I felt that if something came back abnormal my husband and I wanted to be able to face it emotionally after the birth. We are very realistic people and if our children had special needs we wanted to be able to learn enough about the condition before the birth to be the best parents we could be.
JoAnn Tiranno May 05, 2011 at 03:17 PM
When it comes to genetic testing I think the more information you have concerning your families health the better equipped you will be to make an informed decision. That said, genetic testing carries with it, legal, ethical and social implications. Who will be privy to your medically information? How will individuals and families maintain privacy when it comes to employment and insurance companies? How will confidentiality be maintained? Will there be an atmosphere of informed consent between patients and health care providers. Will people be deemed genetically inferior? So many questions, but still it is a personal choice. On a personal note,I was tested and carry the gene for thalassemia B (an inherited anemia), I did decide to also have my daughter tested, luckily she does not carry the gene.
Marian Larson May 10, 2011 at 10:58 AM
The ATP blood test during pregnancy can detect if the baby has spina bifida, a neural tube defect. Due to the amazing advances in medicine, surgeries have been done on fetuses in utero to correct the spina bifida. Certainly something to think about.
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