[lawstudent]

I am currently writing a research paper on adoption. Specifically on the importance of disclosing medical and genetic conditions post-adoption. I've read statutes and other material, but nothing discusses the steps involved to make this happen. I have an idea, but I was hoping to get thoughts and ideas from people who had real life experience with adoption. Has anyone had experience with the process or have any thoughts about it?

Thank you!

[Bug-n-Bears-Mommy]

We adopted thru foster care and the case workers got ahold of as many familymembers in order to gather as much medical history as possible. I think this is VERY important. Anyone who goes to any kind of medical appointment is asked if there is a family history of many different illnesses and diseases. This is so that the medical professionals can help determine what is wrong with you as quickly as possible...starting with areas that may pose the highest risks. This being said, when I take my boys to the doctor, I want that advantage to be able to disclose to the doctors as much as I can so that they can best help my children. Also, with their therapy (speach) it helps the teachers to know that there is a history of ADHD and other problems that can contribute to their behavior and ability to respond to various activities. Family medical history is as important as signing the adoption papers!

[akcskye]

I too agree that disclosure of medical and genetic information is a must.

NONE of that needs to have personally identifying information on it if the birth family doesn't want it to...it can say "maternal aunt, paternal grandfather" etc.

Anyone has a right to know if they are at higher risk for medical conditions, so I feel it should be disclosed with every adoption.

Just my .02

[Poleczech]

I assume you are looking for answers from any member of the adoption triad. As an adoptive mother, I feel it is extremely important to disclose medical or genetic information discovered in the family history at any point with the agency (in the case of a closed adoption), the adoptive parents, or directly with the adopted child after they are 18 so that the information can be given to the child's doctor. Any family history could impact the child's health at some point and it is important that the doctor have all the information possible to provide the best medical care possible. Even if what is discovered is minor or non life threatening, it can still be something that could impact the health of the child and possibly could be prevented with the proper prevententive medical care.

[tomandcate]

As far as the process in my two adoptions, my understanding is that the bmom social worker sat down with both bmoms and went through a medical/social history checklist. The checklist is extensive and covers a very wide range of medical and psychological conditions for both the maternal and paternal birthfamilies, as well as any conditions (prenatal care, drug use, etc.) before and during the pregnancy. We got a copy of the checklist before we accepted the match, so that we could review any issues and decide whether there were any factors we felt unprepared to handle.

Although the checklist is exhaustive, it is only as good as the bmom's ability to report the facts accurately. In our adoptions, this meant that we have very little information on the bfather and his family. Given that some bmoms are young, unless they sit down with their families and ask for this information, there may be little information available about her extended family history as well. There are other considerations (nervousness, uncertainty, embarrassment, etc.) that also might cause less information to be shared.

I think that sharing medical history is as important as selecting the right family for a child. It is yet another gift a bmom can give...

In both our adoptions it has been critical that we knew the health history of both bfamilies and bsiblings because both our boys may have medical issues as a result and we want to be able to watch for certain things and provide the best care possible.

Cate

[thanksgivingmom]

birthmother here - i placed my dd using california's safe surrender law so it was assumed that my dd's medical info would be lost - HOWEVER - i felt it was very important that her family know as much of her medical history as i could provide, i simply didn't want to be in "the system" (for many long reasons). anyway, when i brought dd to the hospital after giving birth at home, i stayed to make sure she was healthy and filled out several forms with my family's medical history, just left off my name. i realize i did not have the bfathers family medical history complete, however, there are instances where women get pregnant and DONT place thier child but don't know the father's medical history because he has left, isn't in the picture, etc.

i just wanted to do best by my baby...hiding the pregnancy and safe surrender was best for me, divulging as much information as i could was best for her, and placement was best for us all.

[DebCsMom]

It is very important to have medical & genetic information. In some cases that isn't possible, unfortunately.

We have very open adoptions. We have all the medical & genetic info on the birth moms side ONLY for all 3 adoptions. Having open adoptions makes it possible for me to call the Birth Moms if I need answers to anything like this.

A good example: our 4 year old daughter has a severe mood disorder & a Autism Spectrum Disorder, PDD. Knowing the medical history has made diagnosing & treating her MUCH MUCH faster & easier! Without this info, who knows how long the RIGHT treatment would take or getting the RIGHT diagnosis!!!!!

GOOD LUCK!

Deb

[Bug-n-Bears-Mommy]

thanksgivingmom

That you took the time to provide what you did is more than many children have...bless you for thinking of your child and making sure they had everything you could provide!

[waiting4amiracle]

APs here. Our birth mom and birth dad provided a rather complete social and medical history as well as a "genetic lineage" chart going back 3 or 4 generations. Having this information is, of course, comforting in the short term but could also prove vital in the long term. Aslo, proceeding with an open adoption we're confident any new developments will be shared with us in a prompt manner.

[DCMomLady]

I guess I am the lone voice of dissent on this subject. I don't think an adopted child will suffer from an absence of medical history or genetic information, except in cases of extremely rare genetic disorders.

While having a medical history can help with diagnosis, it is not necessary in most cases. American doctors are extremely thorough and will perform a battery of tests to establish or confirm a diagnosis even when the medical history is known. If a doctor bases his diagnosis on a family history of disease, he's doing a disservice to his patient. Each patient's symptoms should be evaluated with an open mind, not one predisposed to a diagnosis because someone said there's a history in the family.

We certainly know enough now about preventive medicine and healthy living to keep ourselves and our children healthy without knowing what conditions the previous generations suffered.

I've always felt the "medical history" justification was used by adoptees who simply wanted to open their adoption files in order to know their family history -- who, what, where, when and why. On this forum today, there's a thread from an adoptee who is pressuring the birthmom to release identifying information about the birthfather to see whether he had a disease that the adoptee has already been diagnosed with! Presumably, that adoptee is already being treated and knowing who the father is and whether he had the disease is unlikely to effect or improve the adoptee's treatment. But it's a good excuse to demand the information that the adoptee wants but the birthmother wishes to keep private.

In case anyone feels my opinion should be discounted because I adopted within my family and presumably know all the medical histories of the people involved -- NOT! My daughter's birthfather was also adopted in the closed adoption era with no information provided and neither of them have any problem receiving good medical care.

DeeCee

[Sun8]

Years ago some people had a medical symptom that didnt have a name, knowing they had a history of odd things or numerous visits or tests can be of help. Many of them we have now named but years ago, there was no name or even a realization it may be a genetic medical problem. A medical history would have really helped myself and my brother. Thank heavens my daughter has a medical history thru me, it saved her life, but not knowing mine nearly cost me my life.

Tho we adoptees live our life with families who are our families in almost all ways, we get reminders we are adopted every time we fill out medical paper work. If we leave the family history blank, they ask us about it, so we put "adopted" and that stops any questions but we are again reminded we are adopted and we do not get to have our genetic information or heredity.Somehow we can never just "be" like everyone else even if we tried to.

[ourdreamcametru]

I think medical information should be something that every bparent should have to give. Our daughter's bfather has Asperger's Syndrome and had his parents not given us this information we would not have known what to watch for with our daughter. Thankfully she does not show any symptoms of this disorder but had we not been given a heads up we wouldn't have even know what it was as we had never even heard of it. With early detection many medical issues can be avoided but if aparents don't know they exsist they can't catch them in time.

[sugarbabysmommy]

Originally Posted by DCMomLady

Each patient's symptoms should be evaluated with an open mind, not one predisposed to a diagnosis because someone said there's a history in the family.

We certainly know enough now about preventive medicine and healthy living to keep ourselves and our children healthy without knowing what conditions the previous generations suffered.

We are not blank slates and unfortunately many diseases and conditions have no symptoms early on. In the case of my borther by the time he was diagnosed he was given his death sentence, as a result I've been tested for the same disease far early than considered medically standard based on preventive medicine guidelines. There are not symptoms until it becomes very very bad. I will continue to be preemptively tested for the rest of my life so if it develops I can be treated before it becomes life threatening. The test for this disease would never have been given to me prior to a certain age because it's out of the norm and I never would have known to ask for the test if I didn't have my brother's history. This is just one example of how my family's medical history has helped me and it had nothing to do with my living a healthy life or seeing the doc regularly- both of which I do.

There are many diseases and conditions that occur out of the norm for the general population but many insurance companies will only authorize and pay for tests at certain stages in life- unless there is family history to do otherwise. And many of them have no symptoms or their symptoms are written off as of no consequence because it doesn't fit the disease profile. It happens all the time- for instance the number one killer of women is heart disease and the signs and symptoms are often ignored by doctors- but if a woman has a family history she's more likely to get an EKG and stress tests, like the man with the same symptoms who doesn't have a family history. Doctors carry their own biases.

Having my medical history is no guarantee, but I can safely say I would have been harmed if I didn't have access to it and my doctors would agree.

With our adoptions we all shared our basic medical histories with eachother, face to face and after our child was placed with us we were given the detailed medical info that our child's bio parents filled out. They have very long lives ahead of them, as does our child, and medical conditions can develop later in life, one of the many reasons I'm glad we have an open adoption.

[bromanchik]

Originally Posted by DCMomLady

I don't think an adopted child will suffer from an absence of medical history or genetic information, except in cases of extremely rare genetic disorders.

Breast cancer is not a "rare genetic disorder", yet there is a breast cancer gene that increases the rate of breast cancer in women under 40. These women need yearly mammograms and insurance companies will not pay for them if there is not family history.

Ditto for colon cancer. I might be dead by now if I did not know that my grandfather died of colon cancer. As a result I was tested early and what they found was benign. I was told that if I had waited until the recommended time I would have had cancer.

Sugarbabysmomma is right. We are not blank slates. To regard medical history as unimportant can be deadly.

[bromanchik]

Originally Posted by DCMomLady

I've always felt the "medical history" justification was used by adoptees who simply wanted to open their adoption files in order to know their family history -- who, what, where, when and why.

That's why we should have open records. Birthmothers, or anyone for that matter, should not be able to hold your information hostage. It is their information after all.