Please note, these are my thoughts on the topic at hand, not on any specific bill or piece of legislation.
Too often in Adoptee Rights, an adoptee’s lack of family medical history is used as an argument in the opening of access to Original Birth Certificates. However, the release of OBCs based on medical history implies that adoptees will use their OBCs to find their parents to ask for medical history. To this the industry absolutely jumps at the opportunity to rebuttal “what if the parents do not want to be found!?” Taking advantage of this platform, the industry then interjects its own “solution,” usually suggesting passive mutual consent registries or saying records should be released for emergencies by court order. As a result, neither adoptees who want their birth certificates nor adoptees who need family medical history receive much help. This is because passive mutual consent registries have very low match ratings (and they also do not restore an adoptee’s equal right) and, as you’ll see from my story, legislating that records be released by court order in an emergency doesn’t promise a solution to the issue of health history either.
The need for family health history should not and cannot be in the same discussion as adoptee civil rights – it is trying to make apples into oranges. Both Adoptee Rights and family medical history are enormously important issues and thus each deserves to be addressed separately. Adoptees should have access to their birth record as a matter of right; how that doesn’t involve family medical history is a post for another day. In this post, I want to discuss family medical history and the impact the “in case of emergency court order” so called “solution” has had on my life. I had difficulty writing this as I am using part of my own personal narrative to make my point in this post but it is time to share my story as this topic is very important.
I want to tell you about the morning I woke up without words.
A week before I woke up without words, I had what is called an anterior myocardial infarction (heart attack). When I went to my doctor when the first warning signs of trouble happened, she did the appropriate tests and my concerns were dismissed when she concluded I was experiencing panic attacks.
So, when I had the actual heart attack, I stayed home – you don’t go to the hospital for panic attacks right?
Sadly, if my doctor had my current family health history she would have acted differently when I had gone to see her when the warning signs began. Instead she did what she could with the non-info she had and to be extra cautious, scheduled an additional test. Unfortunately, I was scheduled as “low risk” (non-urgent) for the one test which would have shown the problem. With my family health history, I would have been assessed as “high risk” (urgent) for cardiovascular disease at a young age, because you see, that is my current family health history.
“Would have, could have,” is probably what is running through your head right now – but you see, we discussed my lack of family history each year when I saw her, and how she would be extra cautious should I suddenly change from the very healthy, highly active, no problem person I had always been.
Getting back to my story…..
When you wake up and one side of your body is numb, you can’t walk straight and collapse walking down the hallway, and you try to speak to your man and you cannot form a word – well the obvious thing is to call 911. When I was hooked up to the EKG monitors at the hospital, the alarms went off showing the acute event in my heart that had actually happened a week prior. Funny though, the CT scan of my head did not register my stroke (although I am told sometimes it takes a while to show up – like a bruise, and sure enough it showed up on the repeat CT scan).
It isn’t funny when you are in the ER and the physician is trying to get any type of medical history, let alone family history, and you can’t speak or even write answers. By the end of the night, I could vaguely get out the first syllable of a word to which he would start naming off words that sounded like what I was trying to say.
Not fun at all.
I stumped the cardiologists, whom I saw many of during my stay in hospital because I was atypical. I did not have any family health history to provide any reason why this happened. I did not have the typical risk factors and everything pointed to the fact that I should be healthy. This should not have happened to me because I was too young. And to top it off, I had developed a blood clot in the left ventricle of my heart which had been the cause of my stroke, simply because I did not go to the hospital for those “panic attacks”.
I really don’t remember much of the early days in the hospital. All I wanted to do was sleep; all the medical staff wanted to do was keep me alive and keep me stable.
About a week later I was moved into the regular cardiac ward and the tests continued. Any and every test was done to try to come up with answers. The rounds of cardiologists started, all coming to come see me to try to figure out what caused this. One day, they took multiple vials of blood to send for genetic testing because they were stumped and every other test had provided no answers. Finally, I had my angio and my interventionist, thankfully knew about the rare vascular disease she diagnosed me with.
Finally I had a diagnosis – not a diagnosis I wanted – a disease without a cure and without much info about, prognosis, or even what the best way treat it was.
My cardiologist reminded me that I needed my family health history simply because the damage caused was bad and permanent. She said I was vulnerable so we needed to be proactive instead of reactive: if there were hereditary diseases in my family, we needed to know. Also, my family needed to know about my condition for their family health history.
Hearing the need to advise my family scared me just as badly as how precarious my health situation really was.
I finally went home, my head still muddled from the stroke. Being as weak as a kitten, I concentrated on getting through each day for a bit, and then I asked mom to petition the courts for me. I am not clear on when I asked her, when she submitted the petition, or when the court granted the petition, but it was about 5 months after my events before the process was done.
The granting of the petition only gave me a name and address decades old. I was still incredibly sick, so I hired a searcher. It took them quite some time to find my mother, only to find she had already passed away. I pushed on with the search and finally, I met a member of my family more than a year after I had my heart attack and stroke.
So much for that “in case of emergency, you can always get your records opened so you can obtain your family health history” theory, this “solution” that the adoption industry trots out when the subject comes up with when discussing topics of what adoptees have lost in adoption.
Today I am unable to work anymore and will never work again. My husband’s life has been impacted as well. We are in the prime of life but cannot live it. I have to plan my week around what has to be done and schedule it out over days. If I don’t, I overdo it and it takes very little to reach my limit, and then I am done in for a couple of days. Once I reach that magical limit I am exhausted both physically and mentally. My brain does not work, my speech deficits (spoken and written) come back and I simply exist until my body recovers. On the best of days I deal with some high level cognitive defects in addition to my speech. My speech is not anything like it was before verbal or written. In-depth conversations with me are extremely frustrating as I need to explain via the long version, what I am trying to say, simply because I have Broca’s aphasia. The thoughts in my head do not translate into words. This post is a prime example in that I struggled to get my point across for several days and then emailed Amanda in frustration to see if she could help me get back on track. She did a great job helping me – many thanks Amanda.
Willing parties being able to have, and encouraged to have, ongoing communication to share medical information is of vital importance. I believe I could have benefitted from it. I hope my story will help dispel the myth used by the adoption industry that the “good cause” argument to unseal records “in case of medical emergency” just does not work in real life…at least not when you are sick enough to warrant “good cause” to a judge. This argument from the industry muddies the water, clouding our view of what’s important. It also gives APs an easy reason not to stand up in support of adoptees’ ability to access the information they need; all simply because it calms their worst fear and lets them live in the world of “‘it’ happens to other people” and “if ‘it’ does happen, we can access the ‘in case of emergency’” promise from the adoption industry.
We should be proactive and have on-going, updated information. Not reactive and access the information only when a problem has already occurred making us critically ill.
Please don’t be fooled into thinking that the family health history you received at the time of the adoption is sufficient enough. The family health history that could have changed the course of my life? It happened after I was surrendered. So, that piece of paper you received at the time of adoption – do you really think that will be the gold standard family health history in 30, 40, 50 years?
Some propose that the genetic tests on the market are an easy solution to the issue of lack of family medical history. Well, those tests don’t work either. See this post here that explains why.
And if you are willing to dismiss my story because I have a rare disease, remember there are millions of adoptees. To classify something as a rare disease means there are less than 200,000 people living in the US who have that disease.
The need for family health history should be something that is always in your minds and something you should be hounding the adoption industry to fix now – trust me they have made plenty of money off us adoptees and need to spend some of it on us. Even if it is just to set up a free process to exchange information and to disseminate education to all sides on how important it is to keep medical information current and forwarded promptly. Don’t fall for their so-called “solutions” for court ordered the opening of records.
And for those of you with open or semi-open adoptions – consider my story when you are tempted to close the adoption or to stop sending updates. Don’t be fooled by the adoption industry tactics – they don’t have the best track record of being honest. I also haven’t seen them learn anything or do anything effective regarding fixing these problems – have you? Do you want to be those parents watching your child at any age, go through something similar to my story, knowing you relied the empty promise from the adoption industry that if there truly was a “medical emergency” you could get the info your child needed?
I am hoping my story changed has a few minds.