Has your child been tested for genetic disorders?

As adoptive parents, many people are not aware that newborn screening for genetic orders exists. If you have adopted a child, have you spoken to your doctor about having the expanded newborn screening profile done on your child?

Adult Adoptees - have you spoken with your doctors about testing your own children through expanded newborn screening? If you are a carrier, you can pass these on to your children, however, there are tests that can be done to help identify if you or your children are carriers.

For those who know our story, our son's life was saved thru Newborn Screening. For us, we were fortunate that the bio-family told us of the positive result of the test, but in some cases medical info from birth is not available to adoptive parents or adult adoptees.

So I post this question to ask if you are aware that the tests are available?

Andraya's response is why I posted this question so more people become aware of the importance of these tests.

I wasn't aware of newborn screening until 5 years ago when my nephew was diagnosed with MCAD. I played russian roulette with my first two children as I have now been diagnosed as a carrier! Scary stuff to not know what hidden killers lie in your genes. My daughter was tested for everything under the sun even though it wasn't mandatory at the time, we now screen newborns against 17 genetic disorders.

yes, they automatically tested both my kids right after they were born

I have Post Adoptive Stress Disorder

umm yeah I was adopted, and all clean :) in fact was one of healthies babies in all of colombia. Thank god I didnt stay probablity of children being kidnapped was 60% chance.

how much are the test ?

yes and we sceened

We are actually talking to a doc tomorrow about genetic tests, things just don't add up with his health.

When he was born he was tested and the childrend hospital and was Positive for PKU. 6 months later we got info from the bio family that the hospital where he was born did the test too and it was positive too. I think they thought I wouldn't want him. They didn't know we already knew. Had we not have had him retested, he could have been dead.

Thank God, he was negative on the genetic test for PKU and the positives were related to another condition that caused the retention of phenylalanine.

Genetic testing is one of the miracles of science. I know a family where Cerebral Palsy took the life of their two oldest boys, age 18 and 19. When their other two children reached 16 they had them tested and discovered the boy carried the trait but not the daughter. They also discovered the mother was the carrier. The daughter has since given birth to a healthy baby girl and the son will adopt when the time comes. Both can now live a happy, informed life starting a family, thanks to the wonder of science.

Yes, I believe that children should always be tested for something that has a strong line through the family. My son is 14 and I had him tested for Diabetes which runs in our family. My grandma, uncle, great uncle, great grandpa, myself, etc have had diabetes, and I am so glad I tested my son for diabetes because he has now it.

No, my kids have not been tested. But I began my family when I was 38, and have been in reunion since I was 22.

My kids, thankfully, don't have to grow up in the black hole that I did, thanks to the miracle of closed adoption.

Very good point. Thanks for bringing this up.

Dean
www.goodparentclub.com

I opted NOT to test my children for anything at birth. My children are not vaccinated, had no tests, and no shots at birth.
I know my family who surrendered me and the only disease my dad has is called anti-responsibility. My children are doing great, however, should something come up one day that causes red flags, we'd have the testing done then, but so far, so great!

It's a sad world when an entire subset of the population has to rely on expensive tests in order to safeguard their health, when that information could just as easily be available from their own families.

Thank you, Closed Adoption.

No I haven't and didn't even know this was available. Thank you I will go ask my doctor about what is available

I doubt that any tests could compensate for knowledge of your complete family medical history and I owe it to my kids to find and restore their genetic family tree. In the meantime, I guess something is better than nothing

Yes he has.

my children received all standard newborn screening (genetic, congenital, hearing, et al), including special hemological tests for sickle-cell anemia. i plan to do the same for my child due next summer.

i am a huge supporter of newborn screening.

Newborn screening varies from state to state. Check you state department of health to find out what they screen for. Some are more complete than others. It is not standardized nationally.

Sorry to sound like a dummy. What if your child isn't a newborn?
I did take her to the Houston Children's International Clinic, just after it opened. She had rickets & guiardia & but thankfully nothing else to my knowledge. What should I do? Bless you for asking this question. As you know, all of mine are deleted and this is exactly what I needed from this forum.