An Open Letter to Chicago Med

 
February 6, 2016

Dear Chicago Med, 

I waited a bit to write this letter because honestly I needed time to wrap my mind around all that was (and was not) this past week’s Chicago Med episode. I have to be honest. I have never watched this show before, and only did so because I had heard that mitochondrial disease was going to be featured. Mitochondrial disease is an issue close to my heart and it was a big deal to all of us affected by it to have it on your show given the platform and audience.

Those of us from the “mito” world know that the need for greater education and awareness about mitochondrial disease is tremendous. We are used to taking our kids and loved ones to emergency rooms and having to take on the role of educator as we are met with blank stares at the mention of mitochondrial disease. We know what a difficult, long, and arduous process the road to diagnosis was for most individuals who have a mitochondrial disease. We also have shared experiences of doctors along the way who were stumped by the medical complexity that we brought with us and chose to dismiss or mislabel simply because that was easier than just admitting ignorance and/or seeking out other experts or resources.  We are aware that there are others out there who remain undiagnosed without proper treatments simply because not enough individuals in the medical community are armed with the knowledge about mitochondrial disease. We know that the journey with mitochondrial disease a difficult one – one that can lead to death, and we know what can come in the way of resources, funding, treatments, and potentially even a cure with more awareness and education.  

So you see, knowing that you at Chicago Med had actually taken the time to call one of the leading international experts in mitochondrial disease, and were planning to feature it in a storyline on your primetime show, I was so hopeful about the good that could come of it.
I want to be clear before I go on. I do not feel it is your show’s responsibility to raise awareness about mitochondrial disease. I do; however, feel that should characters on your show utter the words “mitochondrial disease’, it is imperative that your show represent it accurately. This should be the case for any medical condition. You are, after all, a medical show. You have a medical advisor. I would assume that you want to ensure that you bring integrity to your storylines and refrain from haphazard, reckless, and/or inaccurate portrayals of illnesses and hospital protocols.  Unfortunately, what I saw in this week’s episode was exactly the opposite of that. The list of inaccuracies and issues in your episode is extremely lengthy so I will refrain from listing them all. That said, there are some aspects of this week’s show that I must address on behalf of my family and all of those affected by a mitochondrial disease. 

First, your storyline led viewers to the belief that mitochondrial disease is a fictional condition. I know this because most viewers have probably never even heard of mitochondrial disease. I know I never had until my daughter was diagnosed after a long journey of ruling other conditions out and having countless tests to figure out what was wrong. You had one doctor who said she “knows mito”, but allowed for no real mention of what mitochondrial disease. In fact, when the dad started to say “Mitochondrial disease is…”, that is when your writers had him cut off as the doctor began talking. How hard would it have been for him to say what it actually was, or for her to elaborate on it at some point in the episode? You had no problem incorporating the following exchange into your show later when the two doctors were talking:

Dr. Manning: “She has a mitochondrial disease…”

Dr. Halstead: “Mito? We really are talking fiction here.”

Dr. Manning: “You don’t think it exists?”

Dr. Halstead: “Always seemed like a wastebasket diagnosis to me. Doctor can’t figure out what’s wrong, says it’s mito and calls it a day.”

And…you just left it there. No explanation from Dr. Manning. With this dialogue exchange, you basically told viewers that mitochondrial disease is a made up condition, invalidating and demeaning the lives of those who suffer daily with the challenges mitochondrial disease brings. You also insulted those doctors who dedicate their lives to the mitochondrial disease patients and all of the medical complexities and unknowns that come with them. You spit in the face of all those who fight tirelessly on behalf of their family members who suffer, and advocate for more research and funding. “Wastebasket diagnosis” will now and forever be burned into my memory as it is such an offensive term and extremely off base and inaccurate when describing mitochondrial disease. It negates all of the struggles we went through as a family to obtain a diagnosis, and insults the medical professionals that were instrumental along the way. Worst of all, this term is disrespectful to my daughter who struggles daily and has a confirmed diagnosis.

Where is the balance, Chicago Med? I know Munchausen’s by Proxy and Medical Child Abuse exist. I am not naïve. But so does mitochondrial disease – about 1 in 4000 have it. Your portrayal made Munchausen’s by Proxy and Medical Child Abuse look like one in the same.  They are not. We in the mitochondrial disease community have a hard enough time without your show linking us with abuse. 

The following dialogue exchange took place in this episode when Dr. Halstead was trying to figure out what did not seem right about the situation and approached Dr. Charles. 

Dr. Halstead: “I wish there was a simple answer to that.”

Dr. Charles: “What about the not so simple one?”

The irony of this statement is that neither a mitochondrial disease diagnosis nor a Medical Child Abuse allegation is “simple” as you made it seem. Both are extremely complex and varied, and require thorough investigation and evaluation, far more than what was shown in your episode.

If you want to tell a story about Medical Child Abuse, you could have done it without tying it to mitochondrial disease, or at least ensured that your represented the disease accurately and well on your program. So many of us parents of children with mitochondrial disease have had to take on the role as educator and advocate, and literally fight to make sure our children’s needs get met because of the lack of knowledge and awareness. Many have to travel to see qualified physicians.

You also led viewers to believe that this dad had acted all on his own, and was obsessive and pushy about the daughter’s condition. Dr. Halstead made it seem crazy that Michelle’s dad would have her medical records with him, and that his response to not having had a muscle biopsy was a sign of guilt.  Yet the reality is anesthesia can be problematic for many with mitochondrial diseases, and muscle biopsies are costly. They also are no longer the sole means of diagnosing mitochondrial disease. Genetic testing has been expanded and is the standard.

You acted like the dad had driven everything, yet here lays this girl with a central line and gastrostomy tube in her body. These medical measures can only be undertaken after specific tests and diagnoses are made by actual physicians. They are not the work of a father. There was no mention at all in the episode of these doctors seeking out prior physicians to obtain more information on the patient and her ailments. The dad, instead, had just diagnosed her via Google. Do you know how ridiculous that is? Sure, every parent searching for what is wrong with their child who is struggling, is likely to do online research, but his “google diagnosis” alone cannot be the basis for all of her medications (such as the anti-seizure medicine) and her g-tube/central line implants. Parents can yell as loud all they want, but a good doctor is going to make sure all diagnostic processes and treatment protocols are in place for these measures.

When the dad says that he shares that the “good news” was that they had a diagnosis, but the “bad news” was there is no cure, I am quite sure all those affected by mitochondrial disease watching nodded in agreement. It is truth. No one wants something to be wrong with themselves or their family member, but when there is, they definitely are thankful to finally have answers. Unlike many other diseases, there is not a cure for mitochondrial disease so those affected do the best they can with what they have available to them. The truth is the “bad news” extends far beyond their being no cure. The “bad news” is that there is not enough knowledge and awareness out there. The “bad news” is that each individual comes with their out set of medical complexities and treatment only does so much. The “bad news” is for many life is a daily struggle, and for others their life comes to an end due to mitochondrial disease. 

And, the “bad news” is your show had 7.5 million viewers watched last Tuesday, making things even more challenging for those in the mitochondrial disease community. You marginalized and negated mitochondrial disease in the eyes of others, and made those who suffer from it feel even more at risk and insecure about their interactions with the medical community. 

Whether you realize it or not, whether you like it or not, whether you care or not, you have a platform with your show. You have a responsibility. Last Tuesday night, your responsibility WAS NOT to raise awareness about mitochondrial disease, but it IS now. Steps need to be taken to correct your inaccurate portrayal of mitochondrial disease. Many, including myself, would love for you to extend the storyline and have it proven that “Michelle” does in fact have mitochondrial disease and her father is not guilty of medical child abuse.  In that storyline, we would like to see actual information shared about what mitochondrial disease is, and any inaccuracies that were included in this past week’s episode corrected.  I realize this is probably not going to happen. At a minimum, we would like educational statements about the reality of mitochondrial disease included at the beginning or end of an upcoming show, and always attached to any further airings of the “Reunion” episode”.  We would also like statements to be included on your website and posted to Twitter and Facebook.

You can make this right. You need to make this right. I do not know what the future holds for my daughter, but I do know I could not let this go. On behalf of all those affected by mitochondrial disease, I implore you to look into how you can turn this into something good and beneficial to our mito community. Use your powers for good, Chicago Med. In making this right, you can also be helping countless others who have yet to be diagnosed and are suffering daily.

I would welcome the opportunity to engage in a discussion with those involved with your show, either by phone, face-to-face or email. If not me, please meet with others from our mitochondrial disease community to discuss how we can partner to best resolve this matter. I can be reached via email at ndion18@comcast.net.

I look forward to seeing your response to this situation. In the interim, please refer to and share the following links to learn more about mitochondrial disease: 

www.mitoaction.org 

www.umdf.org 

Sincerely,

Nicole Dion

© Copyright  2010-2016. Nicole Dion. Unauthorized use and/or duplication of this material without express and written permission from this site's author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Nicole Dion and Life is a Dance.

By, Bye, Bi 2014!

2014 has been quite a year around here, with the last 5 months so overwhelming at times that I almost forget what even happened in the previous months. This year I have had to truly walk BY faith, which is much easier, said than done.

It has been a huge year of growth, particularly for me, as I have learned so much about myself through each situation and circumstance that arose.  I do not consider myself to be a fearful person, but wow, have I found some places of tremendous fear and vulnerability that I did not know existed. I am thankful for all of it, but the times of feeling so raw are not my favorite:).  
 

This year I said goodbye to my full-time position at the school as I finally conceded that I was drowning and unable to successfully manage all that comes with being a full time administrator, wife, mother, and caretaker of all that comes with Natalie’s medical condition and related issues. In making the decision to step down from my role at the school, Mike and I had to take a huge leap of faith, trusting it would all work out financially and so far it has. Mike and I are thankful for those in our lives who have helped ensure our kids can stay at their private school they have attended since preschool, which was one of our big concerns. Emotionally, letting go was hard as well. I am a doer, a visionary, a person who likes to go full bore into all I do, and it was difficult to step away from something that I loved doing.  That said, taking that leap of faith was clearly the right thing to do. If I ever doubted that we were making the right choice (and I didJ), God has shown me a million times over that it was both right and necessary. I am thankful for that confirmation which gives me peace about our decision. I cannot imagine how we would have gotten through this fall had I been working full time. 

We also had to “say goodbye” to the hopes that we were wrong about Natalie’s condition and the thought that maybe she would outgrow it or it would not be progressive. Natalie had her muscle biopsy, which confirmed her long suspected mitochondrial disease diagnosis and with that came such a mix of emotions and of course, more questions. Talks with doctors confirm that this is for life, and we will take things as they come. We have continued our process of saying goodbye to what we consider “normal” around here, as we are constantly greeting a “new normal” as things change and evolve with Natalie over time. 

One of the most painful “goodbyes” I had this year involved my amazing son Kyle. As I said “hello” to the reality that he was really struggling internally, I had to abandon my hope that we were doing enough to ensure his needs, particularly those emotional ones, were being met amidst all of the chaos and constant goings on with his sister. Both his dad and I have worked so very hard to try and balance things, but with the hospital stays, constant appointments, day to day challenges, and changes in plans, and just overall demands that have come with Natalie since she was young, the fact is, it is really impossible not to feel like “the other child”, the one tossed aside. He is so patient, so amiable, and so very quiet/introverted, you can miss where he’s at if you don't look very close. I am thankful for some realizations that came this fall, and to have a much better read how he sees, feels and experiences our lives. He truly is a gift, and so far from being “the other child”. He is my Kyle, my first born, and my heart. 

The situation with Natalie has continued to be a bit of a roller coaster with the last half of the year being quite a ride. We thought we successfully dodged the hospital stay bullet when we made it through July without an inpatient admission for the first time in years, but really it was just pushed to August for 2014.  It was, once again, for migraine issues, this time one of her migraines that just will.not.go.away. She gets into these cycles that last for weeks on end, and UCSF admits her for DHE treatment over the course of about 5 days. Last year, the DHE held her headaches at bay (for the most part) for about 6 months or so. This past fall, we got about a month and a half reprieve before the headaches came back (and have not really left). Since mid Oct, Nat has had about 4-5 headache free days. She also has developed new symptoms including an intermittent right eye droop and lightheadedness along with increased fatigue and shallow breathing issues.

Around the time I started raising these concerns to the doctor, the results from Natalie’s CPAP study came in and they were NOT GOOD. Earlier in the year, Natalie was diagnosed with mild to moderate obstructive sleep apnea due to weakened muscles at the base of her tongue. Because of this, it was recommended that she go on CPAP at night. The hope was that, with better sleep, she would have much better days with less issues and symptoms. It is not something you want for your kid – to have to be attached to tubes to sleep – but if it works, then you do what you’ve got to do. Mike accompanied her to the sleep study where she was fitted for it and used it for one night. It was rough goings, but they made it through it.  The expectation was that they would get the information needed to set her up on a CPAP and we would be good to go. Instead, the pulmonologist informed us that her results indicated there was severe central sleep apnea with about 12 episodes in an hour, including several lasting up to a minute where she stopped breathing. Mike and I were stunned and honestly, freaking out.  Central sleep apnea occurs when the brain fails to tell the body to breathe and is indicative of a much larger issue. We were told that she was not a candidate for CPAP, and that while they were hoping BiPAP would work for her, they weren’t really sure. That was scary as well because the alternatives are much worse.

Because of the new sleep study results and her other symptoms of increasing concern, her doctor ordered a brain MRI and tests to rule out additional significant secondary conditions. The reality is they were looking for damage to the brain either from possible stroke episodes or migraine damage, or some other hit to the brain to explain this sudden change in her apnea and symptoms.

In mitochondrial disease, strokes are something that can and do occur and we always have to be on guard for signs of strokes with Natalie. Per her specialists, her migraines really are “stroke-like” episodes, and we have been “taught” what to look for in the event that an actual stroke is occurring instead of a migraine.  It's always in the back of our minds. With this knowledge and understanding, I was very scared of what we might uncover.

And, is often the case with Nat, we still aren’t really sure on things. Brain MRIs don't come out to well when done on someone with braces. Per the doctor, there may still be a brain issue, but what could be seen for now looked good.

Her labs were normal for the other condition; however, we were told that 15% of individuals with myasthenia gravis (the main one they were concerned about) don't have positive lab work. The additional test for it will require her to be put under, and we are waiting to see how things go.

The type of mask Nat will have.

While we originally were grieving having to get her a machine to help her sleep at night, we were immensely relieved that her body responded so well to the BiPAP when we went back for that fitting and study. The doctors are hoping that her central sleep apnea was more of an extreme reaction to the CPAP versus a true central sleep apnea. Time will tell. I spent the last day of 2014 picking up the BiPAP and going through training. Nat will spend the first night of 2015 initiating her BiPAP. She is less than thrilled, and we are using doctor-approve bribery to get through the first few weeks. Your prayers would be appreciated!

All of our hope is currently in that BiPAP right now. If after using it, we don't see much improvement or her symptoms continue to worsen, we will need to do some further investigation. This will include removing her braces for a full, clean, and clear Brain MRI so they can see everything, and possibly the more invasive test for the other condition.

It also might just mean that we are seeing progression of her mitochondrial disease, which we know is to come, and that may just be the way it is – another “new normal”.  In talking with her LA specialist last month, he shared that while the migraine issue should improve (though not go away) after puberty, the fatigue and other symptoms are not expected to, and will continue to worsen. He did adjust her medication protocol so we are hoping to see some improvement from that as well.

Either way, we’ve got this. We will take it on one step at a time, walking by faith. One thing I hope we have successfully instilled in our kids is that there is joy to be had always, and your struggles and challenges are not what define you. We believe that and try to live it out each day. 

As I re-read this blog entry, an abbreviated version of some of the events of the year, I realize it highlights the trials. I am not a “glass half empty” kind of girl and assure you that there was an endless list of things we enjoyed this year. Some of them were:

Natalie 's volleyball games during her first year on the middle school volleyball team.

Kyle's swim meets in his first year on the HS swim team.

Natalie's first time away at MDA Camp. She had an amazing time and has been counting the days until MDA Camp 2015! 

Kyle's football games. He started the year on JV,  and was moved up to Varsity to play center. Go #77.

Natalie's performances in both in the 4th/5th grade musical, playing the role of "Petey" (a parrot) and... 

 in Willy Wonka as an "Oompa  Loompa".

Our fantastic yearly family trip to the beach.

Our first family trip to Disneyland in the winter - so beautiful, such short lines!

Hosting the 2nd Annual Mito Mad Hatter 5k with the help of some amazing friends!

And...all of our goofy, fun, and special family times!

And so our journey continues, as we continue to learn and walk by faith, say goodbye to

2014, and usher in the BiPAP along with the New Year. Peace out 2014 – thank 

you for EVERYTHING you brought us.We are blessed and better for it.  As we move into

the New Year, my one word goal is "contentment". May we, and especially I, find it within all

circumstances.                                         

 

                

              

                                                               

   

    

         

Down the Rabbit Hole

When I was little, I read “Alice in Wonderland” and saw the movie many times. I have heard and seen this story over and over. Recently, I watched a clip of Alice’s journey “down-down-down” into the rabbit hole. I could not shake how closely this scene mirrors life with mitochondrial disease.

In the scene, Alice is going about her business, when in an instant everything changes. She is thrust downward into the world of the unknown. That, my friends, is exactly what life with mitochondrial disease is like.  You have no idea where this path will take you, or how  and when things will end.

At the start of your mito journey, what you do know, is that something is just not right in the body. Your journey may start slower, or life may change in an instant like Alice’s.  You have a multitude of issues – some small and perhaps some larger ones – all seemingly unrelated.  And from there, it just goes on and on, as you fall deeper into all that comes with mitochondrial disease.  You live with unknowns every single day and life is never the same again.

As Alice falls, she spins and spins, disoriented and has to work to “center herself”. Unexpected things pop up along the way at every turn.  One scene in the movie that really resonated with me was when Alice lands in the chair after falling for quite some time. At first, she is caught off guard, and appears almost hesitant to sit in the chair. Then, right as she relaxes and settles into the chair, she is thrust out of it, back into falling further down the hole.

As the parent of a mito kid, this could not be a better illustration of our life. Every single day is different and unpredictable. Our daughter’s symptoms can worsen in an instant, and she gets new ones all the time.  It is extremely disorienting.  It seems as every time we “find our groove” and settle into a routine and sense of comfortableness of any kind, we too are abruptly thrust from our comfy chair.  It is difficult not to be in a constant spin, and challenging to embrace the calm, knowing it is only temporary and not knowing what is to come or when.

It is dark in that tunnel Alice is in, and even when she manages to turn on some light, it is dim at best. She reads some, and just continues to fall.  Before your child gets diagnosed with mitochondrial disease, there is a lot of darkness, most often related to ignorance. You don’t know what is wrong with your child, and you oftentimes can’t find anyone who can help. The knowledge about mitochondrial disease is just not where it should be, even in the medical community. People with good intentions can only do so much without the knowledge and education needed to help their patients. Specialists are few, and not always accessible.  When you see your child struggle and can't seem to find answers or assistance, you feel beyond helpless and alone.  Once you get a diagnosis (and treatment), your world gets brighter, but there is always some darkness that remains because we just don’t know enough about this disease.  

Every individual is different in how the body manifests mitochondrial disease. Mitochondria provide the energy your body needs to sustain life and growth. They are in every cell of the body, and can affect your organs.  Your symptoms will be based on which cells are affected, and this varies greatly from person to person, and the type of mitochondrial disease you have.  Mitochondrial disease is progressive, and as such, when you have it, you continue down the rabbit hole. How quickly (or slowly) depends largely on the treatment received and the overall health of the body.

When Alice finally lands at the bottom of the hole, it is quite appropriate that she lands upside down.  Mitochondrial disease turns life upside down for sure. Once you are in it, you are in it for good.  But here’s the thing, like Alice, you can turn yourself around and stand back up.  It’s a choice.  There is a lot that is difficult, exhausting, and painful about Mitochondrial disease, but it is just one part of this life we were given to live. It should not rob you of the joys life has for you, or keep you from living life to the fullest.  My “mito kid” Natalie has one of the most vibrant spirits of anyone I know. She is resilient and chooses to live every day giving it her all. At times, like all of us, her world can get turned upside down, but like Alice, she does not stay there. She gets up and moves forward, ready to conquer whatever lies ahead of her.

It makes me chuckle toward the beginning of Alice’s fall, when she is barely into it, and has just had the initial big drop. She says, “after such a fall as this, I shall think nothing of tumbling down stairs!" My husband and I talk about this all the time. Things that used to seem daunting, frustrating, or challenging, are so minor to us now.  We also do not take things for granted as much as we used to. Like Alice, our whole perspective on life and all that comes with it has changed.

For those people who are just starting your mito journey, I want to encourage you to keep on keeping on. You’ve got this. It’s messy and quite a ride, but you are not alone. And similar to Alice, you may find closed doors over and over while seeking care or help for you and your child, but do not let this detour you. Persevere and keep moving forward. Become the expert. Do the research. Be the advocate. Refuse to give up. And…know it’s okay to have meltdowns. Just don’t stay down. Get up like Alice and trudge ahead – even when it’s hard. Know there are those that stand with you even though you can't see us.

Unlike Alice who made the choice to follow the rabbit and ended up falling down the rabbit hole, this is not a path we chose to go down willingly. Nevertheless, it is the path we are on.  We do not know what surprises lie ahead or where this rabbit hole of ours will end. All we can do is do our best to tackle whatever comes our way and not get so overwhelmed by the journey that we fail to see and appreciate all the beauty in our lives and in ourselves.

Link to movie clip: Down the Rabbit Hole