(Closed) Saying "NO" to genetic testing…

posted 5 years ago in Pregnancy
Post # 3
Member
1949 posts
Buzzing bee
  • Wedding: August 2011

@Cwoodward:  I did. I canceled my aptsfor the blood tests. It won’t change anything and would just stress me out. Not to mention there is no way I’d have an amnio if it came to that. 

Post # 4
Member
10367 posts
Sugar Beekeeper
  • Wedding: September 2010

@Cwoodward:  Even if it wouldn’t effect your decision to keep the baby, downs syndrome, and a few other defects, often require surgery immediately at birth (like, as soon as the baby comes out). If you know ahead of time that your baby has those issues, the doctor can plan ahead and be very prepared, instead of caught totally off guard. It also lets you be prepared as a mom to a special needs child by giving you time to read up on the issues, instead of getting caught off guard/having to process that info during the birth.

Information is power – regardless of what you choose to do with it.

Post # 5
Member
6256 posts
Bee Keeper
  • Wedding: March 2014

@crayfish:  +1.

If your baby has serious problems and needs treatment that could cause the family a great deal of financial hardships in the future, wouldn’t you want to know so that you can get your money in order beforehand?

Post # 6
Member
7904 posts
Bumble Beekeeper
  • Wedding: March 2012 - Pelican Grand Beach Resort

I thought about skipping the testing in the beginning, but ended up doing it. I, like you, would keep the baby whether of not he/she had down syndrome, but after talking to my doctor about it, I realized that an extra 6 months to prepare for a special needs child could be extremely helpful. DH’s brother is special needs (not genetic) so we know first hand that it take a lot of extra work to attend to such a person even when , like DH’s brother, the person is pretty self-sufficient. Furthermore, it’s helpful for the hospital to know that they may need to take immediate steps to ensure your child’s safety. It also could affect your decision of where to labor and whether of not to consider a scheduled induction or c-section. Having a special needs child might also affect who you choose as a pediatrician.

Aside from that, having the testing was the only way to get Medicaid (I’m in a bad insurance position like you were) to pay for an early ultrasound. Otherwise, we would’ve had to have waited until the anatomy scan to hear a heartbeat or see our baby.

Post # 7
Member
452 posts
Helper bee
  • Wedding: March 2014

@crayfish:  I agree with this. It can help you prepare both mentally and practically for a given situation, and will allow yotry doctor(s) to be prepared for any likely complications at birth. Things like neural tube defects (spina bifida) can actually be repaired in utero in come cases as well. Or if there is a DS diagnosis, they can do a level 2 ultrasound and look for physical abnormalities that safe more common in Down’s and may have to be repaired (e.g. heart defects). 

All that said, it’s completely okay to not do genetic testing! Whatever is right for you, your partner, and your child should be your decision 🙂

Post # 8
Member
702 posts
Busy bee
  • Wedding: July 2013

@crayfish:  “Information is power – regardless of what you choose to do with it.”

Post # 9
Member
5479 posts
Bee Keeper
  • Wedding: August 2012

I’m over 30, so I did agree to the AFP screening for Trisomy 18, 21, and neural tube defects.  Since they had to draw my blood anyway, I said they could go ahead and draw the tube to test whether or not I’m a carrier for Cystic Fibrosis.

We knew we would still accept, love, raise, and provide the best possible life for a child with any of these conditions, but I agree that knowledge is power.  I can be better prepared to treat these issues if I know about them ahead of time and can do my own research, interview pediatricians who deal with these issues, and line up additional care should the need arise.

That said, these tests are optional and are in no way required.  Whether or not to test for certain conditions is a decision to be made between a mother, her partner, and her doctor.

Post # 10
Member
702 posts
Busy bee
  • Wedding: July 2013

@crayfish:  for some reason its not letting me type the rest of my message to you lol i’m trying to say I agree with you completely!!! 😀

Post # 11
Member
367 posts
Helper bee
  • Wedding: June 2009

First off, Congrats on your pregnancy!!!

I think it’s fine if you don’t want to be tested.  Several things we were tested for were spectrum disorders, where there’s not way to know to what degree the baby would be affected anyway.  We only got tested because I work with kids and adults with developmental disabilities, and I wanted time to be prepared and organize the supports (health care, social, PT/OT) that I would need to provide optimal care to our child should a disorder be found.

It just depends on your comfort level and personal wishes!
 

 

Post # 12
Member
5547 posts
Bee Keeper
  • Wedding: December 2011

Since the initial round of screenings is no more invasive than a regular blood draw, I will when pregnant have them. Just because it won’t change if I have the baby or not doesn’t mean it won’t change other things like putting away more money for expected therapy costs and finding people and organization to provide early intervention ans support. And just knowing to be mentally and emotionally prepared is a big thing to me. 

Post # 13
Member
5655 posts
Bee Keeper
  • Wedding: April 2011

@Cwoodward:  We declined. I’ve read alot of false positives occuring with the blood tests & having unnecessary worry wasn’t something that we wanted. Also, the risks associated with amniocentesis were not ones we were okay with accepting either. We knew that many physical issues, if any are there, can be found at the anatomy scan & if there was something that needed to be addresses immediately upon birth we would find out then. Of course not all things would be seen in a scan but that was enough for us.

Post # 14
Member
4275 posts
Honey bee
  • Wedding: April 2012

@crayfish:  This is the same reason why I went through with the testing.

Post # 15
Member
4511 posts
Honey bee
  • Wedding: September 2010

@Cwoodward:  I opted for genetic testing not because I’d consider aborting, but because it’s important for the baby’s health to be as prepared as possible. 

Let me give you an example: my sister gave birth to a baby boy with Down Syndrome a few years ago. The genetic testing they did revealed that he had DS, which prompted them to do further testing, because DS is known to be associated with other problems. They disccovered that my nephew had a hole in his heart and that he might need open-heart surgery shortly after birth, and that the doctors would need special equipment etc. in the delivery room. So there was never any question of aborting him, but knowing that he had this heart issue meant that his life could be saved. 

Post # 16
Member
1297 posts
Bumble bee
  • Wedding: June 2011

@Cwoodward:  I was convinced that I wouldn’t want to go ahead with genetic testing before I got a BFP.  Once I got my BFP my Darling Husband and I started talking more serioulsy about it and decided that we will go ahead with it.  Our reason for testing is that we would want to know ahead of time if baby has downs or another genetic disorder.  My Darling Husband & I want to be as emotionally and financially prepared for it as possible.  Whether it means moving closer to family, DH getting a new job with better health insurance.a lot of factors that we didn’t think about before.

 My NT scan is at the end of this mnonth and I get nervous thinking about it, sometimes I still think about backing out of it, but then Darling Husband reassures me that its the right thing to do for us.

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