[Nicole28]

Backstory: my best friend's mom is like my "second mom" - we are extremely close and I share much of my personal life with her, and she is incredibly supportive, especially when it comes to my adoption-related "issues." Her daughter M is 15 and recently underwent genetic counseling. It was recommended strongly by their family doctor because her father had a neurological disease that led to depression and drug use & addiction and eventually took his life when he was in his forties - this disease is X-linked, so M is a carrier, which means that, if she were to have a son, he would [according to doctors/specialists etc.] die before his tenth birthday. So, the genetic counselor basically came right out and told M that her safest bet would be to adopt when it came time to have children unless they make groundbreaking advancements in "genetic stripping" [i.e. genetic selection - using genetics, etc. to choose whether you have a boy or girl] by the time that M is thinking about having kids.

SO - that being said - during a long, serious, no-holds-barred conversation about just about everything tonight, M's mom suggested that I seek out genetic counseling, since I am unaware of my medical history and unable to access it. On a similar note, my best girlfriend, E, is debating whether or not to have genetic counseling and be tested for the breast cancer gene because her mother died of breast cancer when she was in her thirties and E was in kindergarten.

I feel like genetic counseling would be a double-edged sword: on the upside, I could find out if I am carrying genes or are predisposed for certain diseases, etc. On the other hand, say I carried the breast cancer gene. Would I have a preventative mastectomy and hysterectomy? With that knowledge would come all kinds of questions that I honestly do not know if I would be able to answer.

Has anyone had genetic counseling, or is anyone familiar with it? I need to do some serious Google searching, but I am curious as to whether or not anyone has experience with this.

On an entirely unrelated note: it was almost 90 degrees here in Upstate NY today...several degrees HOTTER than it was at my parent's house in Florida. Crazy!

[Jan18]

My husband I and went through genetic counseling when I was pregnant with my dd. We were investigating whether or not my husband had marfans (sp?) syndrome (still not 100% if he has it or not) because there is fatal infant form of the syndrome. I hadn't searched yet, so it was sad to see my little branch with nothing and dh's full of info. They didn't so any blood work or anything on me. Not sure how all that would have worked.

I guess if you are interested, you could sit down with a counselor and explain the situation. I am sure they'd be happy to give you advice!

[jwmjwm]

Nicole, this is really interesting.

Like Jan18, I went through genetic counseling when I was pregnant with my son, because a blood test showed he was at higher risk for a genetic defect. It mostly involved asking my husband and me for our family histories. (Like Jan18's, my side was blank!) There were no actual lab tests.

So, how would it work? Would you choose certain genes to be tested for?

I'm not sure if I'd want to know whether I was predisposed to certain diseases... maybe I would, planner that I am. But you might run into some other issues - insurance coverage, for example.

[Nicole28]

Well, if genetic counseling only involves a sit-down where my partner and I reveal our medical history, then I suppose that it would be pointless for me - - since I have no history to reveal.

I need to investigate further, but I was under the assumption that the counseling involved lab tests/blood work etc. Here's a very good site that does a thorough job of explaining GC - Genetic Counseling.

I will beg for every prenatal test under the sun if I am blessed with the opportunity to become pregnant because one of my biggest fears as an adopted female is birthing a child who may be carrying fatal diseases...if that were to happen, I'd feel as if I had failed as a parent [indirectly, in a sense] because I was ultimately failed by a system of laws in NYS that deny me the right to access this vital health information. I just can't imagine.

Under the "Who Should Consider GC" heading on this site, I find it interesting that they do not include "Women who are adopted or are unaware of their medical history," although I am not surprised.

Adoption is listed as an option for what to do after GC if a couple discovers that they are predisposed to pass along fatal diseases.

There is also a National Society of Genetic Counselors. I am going to continue to investigate, because if this kind of support would be available to me when I am closer to becoming a mom, I want to take advantage of it. I guess it makes me feel a little less helpless in a sense.

jwm, you are right about insurance. As mentioned in the original post, my best girlriend E had tests done that revealed that carried the breast cancer gene, and she has had bonafide trouble getting health insurance ever since because they consider her "high risk." Her premiums on her current plan through the school district where she teaches are unbelievable - bear in mind that E is only 24 and living on a NYS teacher salary.

[curiositykitten]

When I was pregnant with my first child I had an APF test that showed she was going to be higher risk for downs. My OBGYN didn't really properly educate me on this test, and that it's a screening, and can be off if you are unsure of your due date and many other factors.

Flash forward two weeks and we're in an office with a genetic counselor because we decided to have an amnio done. My genetic counseling was nothing more than being asked about my husbands family history and my family history. When I told her that I was adopted and I didn't know she told me "Oh well, it really doesn't matter anyway!"

Basically, the counseling session that we had was worthless, and her only job was to call me and tell me the news after my amnio was complete. I'm blessed that everything was ok. This was around 5 years or so ago so I can't tell you whether or not it's changed or gotten better. My personal experience was that the 'counseling' portion was pretty worthless.

[hrisme]

If you have genetic counseling, and discover that there is a risk of a genetic linked disorder, would you still choose to have children?

In my case, both birthparents have a family history of schizophrenia. Which means, statistically, my children will have a 15% chance of developing a psychotic disorder. Don't know exactly what the odds are for neurotic disorders, but considering that all of my birthfather's siblings have OCD and/or ADD, I'd say the statistics must be pretty high! And I know there is a high risk that my children with have depression, as I have major depressive disorder. I have always wanted children, but now I am seriously questioning whether or not I want to pass on my genetic make-up.

I don't want to raise a child with a major mental illness, but would do so if presented with the situation (whether through birth or adoption). However, I think if I knowingly took the risk of having my own children, and one or more of them developed schizophrenia or another disorder that prevented them from living a normal life, I would feel incredibly guilty.

My therapist's opinion on the matter is that having children is a risk, no matter what your genetic history is, and that the risk is worth it. But then, all four of her children are healthy!

[Nicole28]

If you have genetic counseling, and discover that there is a risk of a genetic linked disorder, would you still choose to have children?

I don't know!! I honestly cannot answer that question. Surprisingly it never came up during last night's discussion. Perhaps this is ignorant, but it might come down to the specific disease/disorder in question - for example, if we learned that I would be likely to pass along a neurological or mental disorder, such as schizophrenia, I feel like it would depend on the statistics - if I my children were 15% more likely to develop schizophrenia, I may see that as less of a risk and proceed with a pregnancy. But like I said, I don't know!! I would really have to do a lot of soul searching and have some serious discussions with my partner.

I also wonder what we would do if we discovered that I was pregnant & the child that I was carrying had Down Syndrome or a related disorder. Would we go through with the pregnancy? I have no idea! Both my boyfriend & I are pro-choice; this is simply a related fact & not an indicator of what we'd choose to do in this situation. I just know that after reading information on GC that many doctors/specialists will recommend or suggest terminating the pregnancy if the couple is unprepared or unwilling to raise that particular child. As I've said on these forums before, I would not relinquish a child for adoption. I would not want to raise a child with a major mental illness, either. But whether or not we'd rise to the occasion and decide to prepare ourselves and raise a child who would be born with physical/mental handicaps is something that I just can't answer now, you know?

My therapist's opinion on the matter is that having children is a risk, no matter what your genetic history is, and that the risk is worth it. But then, all four of her children are healthy!

I agree on some level that having children is a risk even when you have a couple with a flawless, risk-free genetic history. Consider potential environmental factors that could affect the pregnancy, or an accident, or a medical mistake during the birth. Like you, hrisme, I would also feel guilty if I knowingly brought a child into this world that would be predisposed to mental or physical issues down the line.

Then again - - my boyfriend and I have had discussions about the situation in the world we are living in: war, potential epidemics, poor economy, high rate of divorce, prolific drug use, etc. Even if I did have a clean genetic makeup and my child would not be predisposed to any kind of disease or disorder, a part of me will still someday feel slightly irresponsible for bringing a baby into a world that is realistically quite unstable & dangerous, you know?

I just thought of this - my boyfriend's mother is at high-risk for breast cancer & other cancers that are specific to women. I also believe that there is a history of cancer on her side of the family. I have never asked his younger sister if she feels threatened by the potential for carrying the BRC gene...but I'd be interested to know.

[jrainbow]

I too had genetic counseling while pregnant with my second child. It was the most tramatic thing that ever happened to me involving me being adopted. And I will never forget how I felt. We were very worried because my child's test had come back with some very bad results (everything turned out fine in the end) but my husband and I had discussed on the 2 hour drive what we would do if there were serious difficulties.

Anyway, the counselor turned to me and asked me a question. I replied that I was adopted. He drew a big red X across the entire paper, flipped it over, and began talking with dh. I felt non-human and that particular incident stayed in my mind thru out the next 20 years - anytime anything medical came up. The most exciting thing I did after reunion was fill out medical history - for real. No more BIG RED X'S for me.

I would certainly ask if genetic counseling is anything more than an interview. Hopefully they have gotten better.

Good luck

[Nicole28]

Oh my god - I can't believe that! I would have been livid if that had happened to me.

I am so glad to hear that your days of big red X's are over!!

I am going to Google some genetic counselors or an equivalent in my area and make some calls...just to see what a session would cost and what it would entail...because, as you said, if it is just an interview, I'd pass, since I cannot go through my own big red X experience!

[Dickons]

Standard Genetic counseling / testing only works if you have a family history to work with. From the family history they then look to diseases with a hereditary basis that match the family history. Then, if they have found causative genes for the hereditary disease you may be at risk for, they can test you but it will only give you a probability of getting the disease.

Genetic discoveries are being made at a rapid pace but they can only test for what they know. They are also trying to come up with ethical laws that prohibit using genetic information against the person being tested, i.e. insurance but I am sure that will be hard to do.

Birth families should be encouraged to update a family medical history and have it available for the child. I would suggest a notation be made wherever the child would look. Family history that is not kept current isn't as valuable to the medical community because your risk levels increase with the degree of relatedness, i.e. full sister, mother, aunt, etc.

The medical community is in my opinion not doing enough to help the adoptees without a family history, they could be demanding it and keeping the need in the public eyes better than anyone else. How many of us are now reaching our 40's, 50's and 60's when hereditary illnesses quite often present?

Off my rant box for now...

Regards,
Dickons