Dear Future Doctors of America (FDA) (ie: the local med students & even medical school applicants who are flocking to Ellie's hospital room),
Welcome to our humble hospital room. It's not much but it's home. Kind of. Except not really. We are so glad you are choosing to go into pediatric medicine. We are thankful you want to pursue a career that can help people. I hope that you will be inspired by my children to consider going into fields that specifically can better the lives of kids with disabilities. Maybe you will research alternatives to surgeries or develop new treatments. Or perhaps, you will be the doctor who someday treats another patient with the same condition as one of my children - think of how you could encourage and walk beside their parents as they navigate their new normal.
But, in case you missed it earlier in one of our many "discussions", let me fill you in on a few things.
1. My daughter is not here for her AMC. Granted, it may play a role in complicating her health but the primary reason she is here is for a respiratory infection and fever. Just fyi. Please remember you are not here to treat her AMC - we have the top orthopedic hospitals in the country for that job. Take her temp, give her some antibiotics, check her lungs and have a lovely day. Thank you very much.
2. We realize it is very exciting for a young medical student to see a patient with a rare condition. Actually, Ellie's AMC affects 1 in 3000 live births. You don't know it but we have a son whose syndrome only affects 1 in 1.5 million. I'm sure if he were up here visiting your minds would be blown. Anyway, we recognize that any medical student who thinks they are about to make rounds on a pediatric sick ward would naturally be excited to learn that one of your patients has a rare condition. Please funnel your excitement appropriately. We don't want to feel like we are on "Grey's Anatomy."
3. Respect the HIPPA. That means you should not stand outside in the hallway and discuss our daughter's medical history with your friends and then invite them in to "see her." She is not here to be gawked at. Yes, we can hear you. And also, R is an attorney ... beware the HIPPA.
4. More importantly, we would like to introduce you to our beautiful, dark haired, blue eyed, feisty, cuddly daughter. She also happens to have AMC. But she is a human first and she is our daughter. Please remember that - she is not simply a medical condition to come look at. Come admire her. Don't come "study" her. And tell me how cute she is.
5. I too can google. I also happen to have a medical textbook right here in PDF format on my computer. And I have ways to contact lots of other parents of kids with AMC and adults living with it - the real experts. I so appreciate your willingness to study AMC while you are on call during our medical stay here. I'm sure you have passwords that allow you access to journals that I can not access. Please, by all means, research and share what you find with me. We'll take you to the Starbucks in the hospital parking garage in exchange for information! (I'm a research junkie.)
But, get your facts right, please. And if you decide to educate others (ie: the med school applicants on your rounds who you may or may not be showing off for) in our presence about AMC, either have your facts correct or know that we will politely and respectfully correct you. We want information about our daughter's condition to be accurate. (ie: Score 1 for us - the attending doctor confirmed the point we made earlier during rounds regarding a comment made.)
6. It is our honor to be Ellie & Will's parents. We are so blessed to have them - exactly as they are. We do not define "quality of life" by whether or not one requires a walker or wheelchair or prosthetics to walk. If nothing else, I hope we can change your definition of quality of life. Nor can we possibly know at this point what they will each accomplish in life. We have no intention of limiting them. Moreover, they are not lucky to have us. We are lucky to have them. Please don't offer your opinions on "quality of life" or "life expectancy."
Again, we are excited you are considering a profession in medicine. We are excited for you that you had the privilege of treating and meeting our precious daughter, Ellie.
Some of our very best family friends are physicians whom we highly respect and love. They have modeled this example to us repeatedly:
You treat patients - not diseases or disabilities. Your careers will be far more meaningful for you if you apply this to your practice of medicine.
We sincerely appreciate you.
The advocates (aka the parents)
***Based on real conversations***
10 thoughts:
My daughter has Autism, she is not autistic.
I will correct a lot of people who say that. She's a person, not a disorder.
Great post.
You should check out this blog.
www.sixyearmed. com (No space) I love it.
Hope Ellie is on the mend
Beautifully put!
This should be read at med school. Each of them would learn a thing or two from what you just wrote.
Yes, wonderfully written. Gave me goosebumps. Made me go through so many emotions so quickly, as I'm sure you do so often these past few years. your might want to consider writing a book! (as if yo have the time right now, I know.) My husband is also an Attorney...so remember the HIPPA made me laugh for a moment. Praying! Hope Ellie is doing better...
SSSSSOOOOOOOO True Jackson's syndrome is so rare that there are only about 200 in the world. Seriously I get it. He also has a rare heart who everyone on the free planet wants to hear. One doctor even went as far as to announce to the floor that a rare teaching opportunity has come to our hospital and it would be invaluable to listen to said heart. Just as you were saying he wasn't there for his heart he had pneumonia.
Oh yes! Would you like to meet my son, Pierre Robin Sequence,Secondary to Sticklers,Cleft of soft palatte, Nueropathy disorder, Stroke at Birth, Duanes Syndrome,Disarthria, Apraxia, Celiac Disease? You may call him Evan.
I so often smiled when they used the phrase "We do not want to label him with....." Thinking "You just did."
Thank you so much for being and advocate for all!!!
Did you feel that High 5, I just gave yall! Mommies are empowered by the love of their children so back off!! You Rock!!
I respect your point of view, but I really disagree with you on this one! ;-)
When we go to a teaching hospital, I am cognizant of the fact that some of the staff are still learning. If I was bothered by this fact, I'd take my business elsewhere.
My child also has an extremely rare condition. We nearly lost our daughter because of her condition's rarity. Despite visiting experts at some of the best hospitals in the world, she was not properly diagnosed for several years. And when she was diagnosed, it was by a physician who was able to identify the condition because he had seen it once previously. He recognized it in our child.
Therefore, if we're in the hospital -- even if we're in there for something totally unrelated -- and physicians would like to examine my child while she's sleeping, and they do it in a respectful, caring manner, I have absolutely no qualms with this. Maybe -- just maybe -- one of those physicians will go on to see another child like mine at some point in the future and perhaps their life will be saved because they got a prompt diagnosis. And perhaps that child's parents can be spared the agony of months and years without a diagnosis.
That's why I disagree with your stance. But to each his own. I don't know the name of Will's condition, but I'm assuming it's non-life threatening/non-progressive? Perhaps your perspective would be different if you had a child with a condition that's life threatening if left undiagnosed.
But that said, it sounds like you've had some very disrespectful physicians and for that, I'm sorry. No parent or child should have to endure that. ;-)
Thanks for offering your perspective, anon. Let me clarify - especially because several of our best friends are drs & I would not want this post misunderstood!
We choose this hospital because it was the best in the area for what we were needing at that time - respiratory infection on a one month old. I realize it is a teaching hospital & I have often opened up our home med files to students - both in pt, ot, speech therapy, & medical students & nurses doing their training. My children will need doctors & therapists for life - I want ones that are well trained.
But.
But, on this particular day, the med students doing their rounds, seemed more interested in gawking at our child & her diagnosis rather than recognizing her as a person first.
I do not hide my children from the public. I want to spread awareness and show the world how precious & perfect they are. I certainly want doctors to see their abilities - not their labels.
Furthermore, this particular student did offend us by googling our daughter's diagnosis in front of us & then talking on his phone about her in the hall outside our room. HPAA exists to protect patients for a reason. I answered many of his questions & taught him what I could about her diagnosis - talking in the hall to whomever was inappropriate & violation of HPAA laws.
Finally, we were actually asked if future med students doing a tour of the hospital could visit our room. We could have said no, but, as you state, who knows what these future doctors may have to offer another family? We said yes. We wanted to make ourselves available to answer questions and teach them about our sweet girl. We opened our door for that opportunity. But, again, we insist that our child be treated respectfully. She is not a diagnosis - she is a human being. And she's cute. :)
I realize our situations are different. However, at the time of this post, we did not yet know if our daughter could live. We had yet to see the doctor that would assure us she could live. Whether or not she could live, however, does not change my perspective that she (and every other patient) should be treated compassionately, respectfully, and as a person - not a diagnosis to be gawked at.
For the most part, our doctors are fabulous. As it sounds like you have, we have built wonderful relationships with doctors all over the USA. We value them and their opinions and expertise. We trust them with our children.
I hope this particular future doctor learned from visiting with us and our child that she is so much more than a diagnosis. I hope his future practice in medicine will be impacted for the better from meeting Ellie. At one point, he attempted to define her quality of life - again, based on a diagnosis (which we told him - he did not make the diagnosis) & based on his brief encounter with us (there for a respiratory infection - had nothing to do with her diagnosis.) I had the privilege of teaching him that quality of life is not determined by one's physical abilities or whether or not Ellie walks on time or with or without assistance. I hope that perhaps we might have changed his perspective on what defines quality of life. I hope we broadened his perspective so that future patients will benefit from his experiences.
Just wanted to clarify...
To clarify:
1. The med student tried to define quality of life for Ellie. I hope we broadened his perspective on what is quality & that he can take that to benefit his future patients.
2. We purposely chose this hospital & gave our permission for future med students touring it to enter our room. We were open with information about our child - we too want to educate our future doctors to benefit others. We have also allowed student nurses, pts, ots, speech therapists, etc train with our kids. We recognize a huge value in hands on education.
3. However, we expect our doctors, nurses, etc to treat our children with respect and compassion. They are NOT to be gawked at - they are not a diagnosis. They are human beings.
4. At the time of this experience, we didn't know if Ellie could live - that was confirmed later.
But it doesn't change our feelings that our children should still be treated as humans first - not as diagnoses.
5. We love all of our doctors & have built relationships with several around the USA. We value their expertise & compassion. This particular med student was just over eager for a rare diagnosis & is still learning how to be compassionate & respectful & to broaden his perspective on quality of life...Hopefully, meeting our Ellie girl will benefit him in this regard in his future practice.
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