What Does Alzheimer’s Have to Do With Adoption?

Sometimes I wonder if knowing my medical history is a blessing or a curse.

Watching my dad go through Alzheimer’s disease has made me wonder if I will go that path as well. A new report in Annals of Neurology links Alzheimer’s with rosacea, a skin condition which I’ve had for several years. I’m at the point where I understand that this Onion article about trying to hide normal memory issues (so my kids won’t put me in a home) is both really funny and poignantly close to the bone.

I have many things for which to be grateful: preventive health care, good medical insurance, loving family and friends. I can’t Iive my life in fear. I am seizing the day (the moment!) with intention and joy, as much as possible. “After the ecstasy, the laundry,” says Buddhist writer Jack Kornfield. There’s plenty of mundane to go around in the midst of enlightenment.

About that enlightenment: I have some sense for my genetic possibilities. It gives me options to prepare, to inform my doctor, and to make decisions as best I can.

IMG_6175

That reality gives me a tremendous advantage over way too many adopted people, who are denied their own medical histories.

Though I never knew her, I enjoyed the writing of Susan Perry (a mom of two and grandmother of six, a retired teacher in New Jersey) who wrote a thoughtful blog called Family Ties. She was adopted as a baby. She died just over two years ago from melanoma, less than a year after connecting with her biological sisters and finally learning about her own genetic history. It was too late for her to engage in preventive care. While it’s wretched consolation, her daughters and her grandchildren now have more medical knowledge about their own histories as well. Susan was a strong advocate for adoptee rights, and her daughter continues to post on her blog, providing valuable insights.

As Von of the highly regarded blog The Life of Von rightly pointed out to me, adoptees don’t “deserve” to have access to their medical histories, for themselves and for their children and grandchildren. It is their right. It just seems so obvious, but we still–in 2016–limit the access of human beings to their own information. It’s an astonishing failure of civil rights.

There was never any legislated guarantee of privacy given to birth parents who placed their children for adoption. Today, some 20 U.S. states allow some form of access by adoptees to their own birth certificates. Several state laws have restrictions, including veto power by birth parents.

The saliva sample tube for DNA 23andme.com testing

Many adoptees use Internet search services and other means to find their information. Some use DNA testing which can help locate cousins, siblings, and sometimes parents. It is possible to get medical/genetic history from DNA tests, but it is far better (and a basic human right) to be provided with the correct information about one’s actual history.

Of course, it’s not just knowledge about physical health that is vital, but mental health as well. Knowing the history of depression (or schizophrenia, anxiety, alcoholism, addictions) in one’s family, for example, can be life-saving.

Being adopted should not mean being denied access to life-saving information. Yes, I find it sobering to know my medical history sometimes. I don’t take it lightly, nor for granted, especially knowing that thousands and thousands of people don’t have the option to know, to take proactive steps to care for themselves, and to pass the information on to their healthcare providers and their family.

 

Further information:

(Birth Mother) First Mother Forum

Adoption and Birth Mothers: Adoptee Rights

Bastard Nation: Adoptee Rights

The Declassified Adoptee

American Adoption Congress

 

Romanticizing Adoption Is a Disservice to Children and Families

The romanticization of adoption is common, draining, and harmful. If I say “adoption,” and you say, “Awwww,” picturing cute waifs on a charming playground smiling with their  interracial family–well, you have bought into a Disney/Hallmark version. It’s unattainable because it isn’t real. Yet it’s rare for someone to say to a biological family what is all too often said to parents who adopt: “Wow, I really admire you. You’re a saint. I could never do that.”

That romantic view is pervasive and powerful, one that puts a burden on adoptive families and adopted children. It allows, even encourages, parents to embrace unreasonable expectations, and then pass them, unfairly, on to the child.

What happens when the child does not and cannot meet the romantic image?

Two unromantic realities that some adopted children deal with are (1) hoarding and stealing food and (2) difficulty with appropriate bathroom behaviors. These behaviors can be very frustrating to adoptive parents, especially those who have raised bio children, and who are used to setting limits and being obeyed.

Hoarding food, overeating, and stealing food are common behaviors for adopted children, at least early on after their arrival in a home with plenty of food. Hoarding food can give a sense of control to a child, a back-up in case the food disappears again. We might look at hoarding as survival skills for children who have, in their short lives, been deprived of food, been painfully hungry, or have been forced to compete or struggle for food. Or we can see it as defiant and selfish.

This was true for Hana and Immanuel Williams, and apparently for the two Barbour children: Allegations of hoarding and stealing food are part of these child abuse cases, and the children were viewed as rebellious.

In the case of Hana and Immanuel, the parents did not seek help; in the case of the Barbours, they ignored it. In both families, the children were abused and endangered.

For unprepared adoptive parents, the hoarding and overeating behavior can seem insolent and pointless. Maybe the adopted child snatches food from the bio child. Maybe the adopted child continues to steal snacks and perishable foods (sticks of butter, grapes, cheese, hot dogs) and stuff them in between mattresses or in coat pockets–even though he’s been told repeatedly not to, or has been punished severely.

Restricting food, as Kristen Barbour apparently did for the 6-year-old boy, and as Carri Williams did for Hana and Immanuel, is often an unsuccessful approach. Hana died from malnourishment and hypothermia. The Barbour boy was diagnosed with malnutrition and possible hypothermia as his body temperature was 93.6 when he was admitted to the hospital and removed from his adoptive home.

Food issues are challenging in our society, and we often don’t like to talk about them. They can be huge in adoption. A child who hoards and steals food, who overeats compulsively, who constantly asks for food even when he’s likely not really hungry–it’s not attractive behavior.

Even harder to talk about and even less attractive are toileting issues. Toilet training is a major obsession and developmental issue for us as parents, never mind for the children.

They can be enormous issues for adopted children, since peeing and pooping are self-regulatory processes that are affected by emotions, fear, trauma, genetics, a need to control an unsettling situation, and medical conditions. And we don’t like talking about any of it, so too many people, including children, suffer alone. The Barbour boy had lesions on his skin because he’d been made to stay in urine-soaked clothing. Immanuel Williams was sprayed with a garden hose, and made to sleep on the floor of a shower room, because he peed on himself.

Children often regress in toilet training when there is trauma in their life. Some children forget to take time to pee until it’s too late; some children hold poop in until it’s dangerous to their health. Boys take longer than girls generally to master the art of toileting. Did you know that some children who have been sexually abused defecate in their beds to keep predators away?

As a society, we generally don’t like to talk about urine and feces. As adoptive parents, we like to think that we can get these long-hoped-for, finally-arrived-home children to behave nicely and politely and appropriately. We want to be the Hallmark card.

That can be an absurd expectation, at least early on and sometimes years after placement in an adoptive home, especially for children who may well have experienced trauma.

Here’s a further complication. In addition to expecting the same behaviors from adopted children that non-traumatized, physically healthy bio kids from birth have, one of the biggest burdens in adoption is the wrongful expectation that the adoptee should be grateful for being adopted. It’s difficult being the child of a saint, I imagine. Gratitude is complex in adoption. So are the notions of “rescue” and “saving.” What happens when a child is not grateful for being adopted? (“We adopted you, and saved you from the hellhole you were in, and you steal our food and pee on the floor?”)

Let’s do a much better job preparing prospective parents for the scary things, many of which may not happen–but could. Let’s celebrate the joy of becoming a family by understanding that the child had and lost another family before this one, something that can create a trauma even for infants, and let’s be open to the child’s needs. Let’s emphasize the benefits of flexibility in handling children’s behaviors, and decrease the element of shame in seeking help.

Let’s stop romanticizing adoption, and Hallmarking adopted children and their adoptive parents. Let’s build families in a positive, healthy, and realistic way.

You can find information about adoption and hoarding food here and here, and information about adoption and toileting issues here and here, as well as many other places on the Internet and elsewhere. Finding information and community is key. There are plenty of solutions and approaches to hoarding and toileting that don’t involve abuse.

My post “Does “Adoption” Really Equal “Trauma”? may be of interest as well.

 

 

You, 23andme: An Update

On December 6, 2013, 23andMe posted a notice saying they are suspending health-related genetic tests to comply with the FDA’s regulatory review. People who bought the tests before November 22, 2013, will still have access to their results. 23andMe hopes to offer health-related results in the future. The ancestry-related genetic tests and raw genetic data will still be available now. Click here for the complete notice.

On one level, the many genetic testing and ancestry services that currently exist are amazing and are opening incredible doors. For a good overview of Genomic Testing from the Centers for Disease Control and Prevention, click here.

On another level, the first solution should be access to original birth certificates (OBCs) that would allow adopted people the basic civil right to know their own histories. (I’ve written about the need for OBC access here.)

Until our legislators come to their senses and allow adoptees this basic human right, genetic technology at least sheds some light on otherwise dark corners.

I’ve written several times about DNA testing and its value to adoptees, first/birth parents, and others who have gaps in their histories. You can read  “DNA, Pandora’s Box, and Answers?”, “DNA Testing, Adoption, and Outrage,” and DNA Testing and Adoption: Filling In Many Missing Pieces.”

One of the most popular services, 23andme, provides a range of services related to genetics. As the website says, you can discover your ancestral origins and trace your lineage and find out what percentage of your DNA comes from populations around the world (East Asian, sub-Saharan African, British Isles, etc.). There is a family tree tool that allows connection with genetically-related relatives, and some astonishing connections among first/birth families have been made that way.

23andMe also allows you to find out inherited traits (such as lactose intolerance and male pattern baldness), carrier status of certain diseases (for example, cancer), health risks, and drug responses. It doesn’t include all diseases or all health risks, but it does provide some substantial information.

As a result of the genetic health testing service, 23andMe recently received a warning letter from the Food and Drug Administration.

You can see the complete letter here.

Here is an excerpt:

“The Food and Drug Administration (FDA) is sending you this letter because you are marketing the 23andMe Saliva Collection Kit and Personal Genome Service (PGS) without marketing clearance or approval in violation of the Federal Food, Drug and Cosmetic Act (the FD&C Act)…

(Y)our company’s website at http://www.23andMe.com/health (most recently viewed on November 6, 2013) markets the Personal Genome Service for providing ‘health reports on 254 diseases and conditions,’ including categories such as “carrier status,” “health risks,” and “drug response,” and specifically as a “first step in prevention” that enables users to “take steps toward mitigating serious diseases” such as diabetes, coronary heart disease, and breast cancer. Most of the intended uses for PGS listed on your website, a list that has grown over time, are medical device uses under section 201(h) of the FD&C Act. Most of these uses have not been classified and thus require premarket approval or de novo classification, as FDA has explained to you on numerous occasions.
Some of the uses for which PGS is intended are particularly concerning, such as assessments for BRCA-related genetic risk and drug responses (e.g., warfarin sensitivity, clopidogrel response, and 5-fluorouracil toxicity) because of the potential health consequences that could result from false positive or false negative assessments for high-risk indications such as these. For instance, if the BRCA-related risk assessment for breast or ovarian cancer reports a false positive, it could lead a patient to undergo prophylactic surgery, chemoprevention, intensive screening, or other morbidity-inducing actions, while a false negative could result in a failure to recognize an actual risk that may exist.

…The risk of serious injury or death is known to be high when patients are either non-compliant or not properly dosed; combined with the risk that a direct-to-consumer test result may be used by a patient to self-manage, serious concerns are raised if test results are not adequately understood by patients or if incorrect test results are reported.”

Health literacy is an issue in America, where people fail to follow instructions, misunderstand dosage, or get confused about a diagnosis. I’m sure there is some validity to the FDA’s position, though I also believe that most people who would use 23andMe would also consult with a doctor, who would then order additional tests.

Many 23andMe lawyers have no doubt been working hard in response to the letter. The information on the web page currently is vague:

23andMe

press release

23andMe Statement Regarding FDA Warning Letter

“We have received the warning letter from the Food and Drug Administration. We recognize that we have not met the FDA’s expectations regarding timeline and communication regarding our submission. Our relationship with the FDA is extremely important to us and we are committed to fully engaging with them to address their concerns.”

New Yorker article this week notes that “many doctors who want medically relevant genetic information about a patient get that information by asking her to sign up with 23andMe. Meanwhile, this company’s cheap, widespread testing, which has gathered genetic, ancestry, and health data from nearly five hundred thousand people, has created a rich medical source of risk information.”

It’s been a huge source of information for adopted adults and for first/birth families in terms of creating connections, as well as allowing them to fill in previously missing information on medical forms. “Unknown” is no fun to post on a medical history.

At this point, 23andMe is still taking orders for its kits, still posting numerous disclaimers  about test results, and still urging consumers to see their doctors. Lawyers are looking into their response to the FDA. A change.org petition has been started. A petition to the White House is up and running. 23andMe has 15 working days from November 22 to respond to the FDA letter.

In addition to 23andMe, here are some other sites to explore and consider:

www.FamilyTreeDNA.com

www.mixedrootsfoundation.org/global-adoptee-genealogy-project

https://genographic.nationalgeographic.com

http://groups.yahoo.com/group/AdoptionDNA

Let’s hope that 23andMe will be allowed to continue safely providing this revolutionary, life-changing service, to those who have few other options of accessing medical information. Let’s hope that other accurate, cost-effective services become available as well.

And let’s continue to work toward  adoptees having access to both their original birth certificates and their own medical history.

DNA Test kits from 23andme.com

DNA Test kits from 23andme.com

DNA Testing, Adoption, and Outrage

Imagine a room with a bunch of nice, older ladies. They are mostly smiling.  A few are cranky. I’m in there too, along with other grandmas. (It still shocks me I’m a grandmother, but Zariyah will be 7 in October, and I’ve come to terms with it.  Best thing ever.)

Imagine that some of these nice, older ladies are fundamentally denied two basic civil rights: access to their own original birth certificates, and knowledge of their medical histories. Imagine that your mother or grandmother has no idea what contraindications exist for medications. Imagine your grandma’s painful medical condition that could have been easily prevented with proactive treatment.

I tend these days to first think of adoptees as being not children, but young people, because of my own young adult children. I need to be more inclusive in my thinking and acknowledge more fully the adoptees in their 40’s, 50’s, 60’s, 70’s, and beyond. That’s especially relevant around medical histories.

I posted yesterday about DNA testing and its value to adoptees. I received an absolutely on-point comment from TAO, a blog which you should follow. Now.

Here’s a quote from her comment:

“I am glad there is genetic testing available for many of the same reasons you note and while I don’t disagree with the statement “Finding out about potential future medical conditions could be frightening.” yet, I can’t begin to tell you how frightening actually living through a medical emergency without FHH is, and that reality plays out for adoptees more often than people want to believe.”

Family Health History, or First Family Health History, should be a given. TAO (The Adopted Ones, from the Baby Scoop era) is so right, and has put my delicate statement “Finding out about potential future medical conditions could be frightening” into the light of day where I now say:

Denial of medical histories is an outrage. Knowledge of one’s medical realities is so taken for granted by those of us who don’t have to think twice about it.

Knowledge of one’s medical history can be a matter of life and death. Certainly that knowledge can hugely impact the quality of one’s life.

And yet there are hundreds of thousands who ARE NOT ALLOWED to have this information.

Yesterday I was polite, and provided DNA testing information as if I were giving out lovely little flowers to brighten your day.  I have no doubts that DNA testing is valuable, and provides great information.

But today, I am angry. US and international adoptees, whether they were adopted today or 75 years ago, should have access to their original birth certificates: there remains no doubt in my mind about that. They should also have as full, accurate family health history as possible. It’s an outrage that they don’t, and that they have to struggle to get it.

I would love to see more adoptive parents, grandmothers, grandfathers, adoption attorneys, adoption agency workers, and medical professionals joining in outrage.

TAO noted also in her comment to me that “not all genes have been found for common diseases let alone the estimated 7,000 rare diseases that affect 1 in 12 Americans…genetic tests are a poor substitute for a good FFH.”

Excellent point. Genetic tests are helpful on some level, no doubt. But genetic tests, as they exist now, are no substitute for a thorough, accurate first family health history.

From TAO’s “About” page:

“As you will notice as you read our posts both of us were impacted in different ways by the lack of current updated family health history because of being adopted.  While having the family health history may not have changed the course of our diseases – the knowledge in my case may have prevented two life threatening events, and for shadowadoptee the knowledge that she would go blind sure would have been nice to know…”

DNA Testing and Adoption: Filling In Many Missing Pieces

Access to information about our DNA is now easily available. This genetic information is wonderful and daunting for all of us, and perhaps especially valuable for adoptees, whether US or international.

It’s relatively inexpensive ($99) now to find out what percent of your DNA comes from what population (Sub-Saharan Africa, Europe, South America, etc.). Adopted people of mixed background can get an accurate breakdown of information that they may never have received nor otherwise could find out. A friend of mine, adopted from Colombia, found out she is Mayan, Middle Eastern, and Spanish/French.

You can also find out about medical matters,  such as whether you are a carrier for cystic fibrosis, Tay-Sachs disease, sickle cell anemia, and many more. You can learn your genetic risk for diabetes, macular degeneration, Parkinson’s, and other serious conditions.  You can discover how your genetic makeup could impact sensitivity to certain medications and drugs, such as Plavix and Coumadin.

Because the DNA results are all part of a global database, it is possible to find previously unknown relatives, from close family to distant cousins. In terms of search, for adopted people, this is huge.

I drew the information above largely from the website of one of the most popular sites, www.23andme.com. The “23” refers to the number of pairs of chromosomes we humans have.

The testing is done via saliva, about a half teaspoon’s worth. Young children can be tested; the kit is modified for folks who can produce saliva but not spit.

Adoptees are often missing their own medical histories. Every visit to a doctor’s office can be a reminder of loss, guesswork, and uncertainty.  Writing “Adopted” and crossing out the Family History section can be frustrating. DNA testing eliminates some of the mystery, and fills in some of the blanks.

Of course, this genetic information opens a lot of potentially complex new doors.  Finding out about potential future medical conditions could be frightening.

I still will say, though, that information is power. These days, we all have to be really strong advocates for our physical and mental health. Genetic testing gives us more information to work with, and allows us to engage our health care providers more effectively.

I’ve offered to get the testing kits for each of my (young adult) adopted children. They are considering it, and I can understand the need to take some time to decide. I’m going to get the testing done on myself.  I’m not adopted, and I feel pretty confident that my ethnicity will be fully Irish. My mom died at 74 from cancer; she suffered with interstitial cystitis for years. Dad, now 83, is in great physical health, and also in the early stages of Alzheimer’s. So I have some sense for the possibilities, and, at this point in my life, would rather have the information than wonder about it.

Everyone should have that option.

DNA helix

Here are some interesting sites to explore and consider:

www.23andme.com

www.FamilyTreeDNA.com

www.mixedrootsfoundation.org/global-adoptee-genealogy-project

https://genographic.nationalgeographic.com

http://groups.yahoo.com/group/AdoptionDNA

Ethiopian Children and 2 Medical Issues

A quick PSA about 2 Ethiopian-related medical issues. One is physiological, and one is cultural. For adoptive parents of Ethiopian children, this information ought to come from agencies prior to placement of the children. Parents and others may want to share this information with their pediatricians, dentists, and other medical caregivers.

The first is about codeine.

When children have tonsils or adenoids removed, they are often given codeine after surgery for pain relief. Ethiopians are more likely to be “ultra-rapid metabolizers” of codeine than other ethnic groups. This means that if the codeine is given to them in the wrong dosage, there can be serious harm done.

A quote from the FDA:

“These ultra-rapid metabolizers are more likely to have higher than normal amounts of morphine in their blood after taking codeine. High levels of morphine can result in breathing difficulty, which may be fatal.

From one to seven in every 100 people are ultra-rapid metabolizers, but they are more common among some ethnic groups. Twenty-nine percent of North African and Ethiopian populations are ultra-rapid metabolizers, and about 6 percent of African American, Caucasian and Greek populations are also affected.”

Here is more information, which you may want to print out and give to your doctor and dentist.

The second is about the uvula, that bit of flesh that hangs down in the back of the throat.

I’ve known a number of Ethiopian adoptees, particularly those adopted after infancy and toddlerhood, who have no uvula. Their uvulas may have been removed: here’s further information. There may or may not be any subsequent complications; those adoptees that I know have had none, but the pediatrician was surprised. This information may be worth sharing with your pediatrician.