Thursday, August 1, 2013

An Open Letter to Doctors...








An Open Letter to Any Doctor Who Will Listen.  




Dear Medical Establishment,

I first want to thank all of you for the work you do.  Where would we be without dedicated doctors, nurses, and all of those who support them?  Some of the most amazing, compassionate people I know are doctors and medical professionals. The church where I pastor is blessed with some of the best. That gives me reason to believe that the many I don’t know are likewise great people.

I appreciate the sacrifices all of you make, but events in recent days have caused me to shake my head at the way some of you do things. And the way you do things has become very personal to me. My six-year-old daughter’s life depends on it.

Lily was born with a host of medical problems, but we discovered over time that almost all of them were solvable problems if we could only get in front of the right physician who would listen long enough to improve her health. Lana (her mom) and I have learned through painful experience to listen skeptically and push back – regardless of whether you roll your eyes or shake your heads.

We have never tried to be the kind of know-it-all parents who spout off Google findings to you, but we have found that we can understand a lot more than you think we can. We may not know everything you do, but we know the entire breadth of Lily’s medical history, and we know our daughter - better than any doctor could be expected to know her. And that is why we are asking you  - pleading with you – to listen more.

This is where the breakdown seems to happen. We believe your world is full of brilliant doctors who are hindering the progress of their patients because they have tunnel vision when it comes to treatment. You tend to have one – and only one – protocol for solving a certain problem. If our issues happen to fit your profile, we are headed for healing! But if we have any unique detail, well, that’s our problem. I could write a book of examples, but let me briefly offer four:

- Our oldest daughter Ryley was diagnosed with Type 1 Diabetes when she was five years old. At the time, we felt like life was over. Now that she is a vibrant, healthy nineteen-year-old, we have learned that she can live a full life with the condition. In the first year of her diagnosis, we did extensive research to find the best treatment possible.



We became convinced that this would be insulin pump therapy – something that was relatively new technology at the time, but used almost exclusively when blood sugar regulation was deemed critical. For example, pregnant diabetics were almost always placed on a pump. We determined that, if we wanted the best treatment for our daughter, we wanted a pump. But our doctor said he thought it was “overkill,” that we as parents would end up having to manage the pump (as if we weren’t having to manage the shots of a five year old!), and that it wasn’t going to happen. It seems ridiculous now, but we were declined for pump therapy by multiple doctors in multiple states until we found a doctor in Charlotte, North Carolina who was on the cutting edge of pump therapy for children.

Looking back now, this journey really prepared us to ask the hard questions and keep trying until we got the answers we needed – a lesson that has proven to be very significant in our lives. She’s been on an insulin pump ever since, and it has been life-giving to her. Incidentally, most child who are diagnosed with Type 1 Diabetes today are strongly urged to consider insulin pump therapy. Pump therapy for children was just as logical in 1998, but doctors were used to moving in a different direction.

And they weren’t listening.

- Our youngest daughter Lily was born with a large hole in her heart. The Cardiologist who treated her said that she would need surgery as soon as possible to repair the defect in order to survive. However, he shared with us that it would be even more dangerous to do the surgery until she weighed at least eleven pounds.



So we found ourselves in a race against the clock, with a child who couldn't gain weight because her little heart was working so hard to stay alive. And painstaking weeks passed until we sought a second opinion in Houston, with a surgeon our research had shown to be among the best in the world. He immediately scheduled the surgery – sharing with us that they could accommodate for her small size with technology, and openly questioning whether she would have ever lived to attain the eleven pounds we were waiting for. The first cardiologist wasn’t necessarily wrong. In fact, he was a very nice man who we have kept in touch with through the years. He just didn’t have all the information. But couldn’t he have done what we did - a little more research? We asked whether there was any other alternative to waiting, but he had his timeline to maintain.

And he wasn’t listening.

- On another scary occasion, Lily couldn’t hold down any food. She was admitted to the hospital for constant vomiting and concerns over dehydration. Lana and I had a deeper concern, as this seemed to be more than just an average illness, and it appeared that she wasn’t able to keep any food down at all. The attending physician in the hospital explained to us in very condescending terms that “new parents usually misunderstand the volume of substance that is being spit up.  It’s probably only a tablespoon of liquid.”  Of course, the fact that we weren’t “new parents” and had raised two others was not important to him. He moved on to the next patient with his “collaborative team,” leaving us begging nurses – anyone! - to please probe further. By the grace of God, Lily projectile-vomited that evening in front of one of the residents on the floor, and he was shocked at the magnitude of what had just happened. He started researching, and by the next morning, returned with orders for an intestinal ultrasound to verify his suspicions. Sure enough, Lily had Pyloric Stenosis, which is a closing off of the intestines. The food could only move so far down the line before being forced right back up. All of it – not a tablespoon. One would imagine that someone would have listened before she died from malnutrition or potassium poisoning, but we’re grateful for one man who listened before we got to that point (even if he only listened because he finally saw what we were reporting with his own eyes.)  Lily was scheduled for immediate surgery. The first doctor may not have been wrong about spit-up volume and new parents.

But he wasn’t listening.

- In that dramatic first year, we learned that Lily also had Grade 5 Kidney Reflux – the most severe degree of the condition.  This can cause all sorts of complications, infections, and eventually kidney failure. We visited a specialist in Houston while we were there for Lily’s heart surgery, by now assuming that the secret was just to go to doctors in the bigger cities.  It’s not that simple, though. An older specialist brought in all of the charts and x-rays and then explained to us that “with such a severe condition, there is only one option. As soon as she recovers from open heart surgery, Lily needs to have kidney surgery right back here in Houston.”  This was not the news we were hoping for, but we were also ready to do whatever it took – so long as it was necessary.  Lana’s concern seemed silly to the doctor, but makes sense to every mom we’ve shared with since.  She wanted to know about the scar.  Lily was already going to have to go through life with a massive verticle scar on her chest from the heart procedure, and now she was destined for a matching horizontal scar on her abdomen.  So when we got back home, I went to work searching the country for less invasive surgical procedures on kidneys.  That led us to a specialist in Boston, Masachusettes who was using an innovative robotic process to fulfill the same need as the Houston surgeon.  Off we went to Boston to meet with an amazing doctor who also taught at Harvard. Except we didn’t talk about the robotic process. Instead, this doctor said he had read her entire report (what a great idea!), done some more research related to the possibilities, and concluded that we didn’t need to do anything for at least a year. Instead, he proposed that we place her on an antibiotic to prevent infection in the meantime and see whether Lily would grow out of it. And guess what? Nearly a year later, when we went back for the follow up exams, Lily didn’t have Grade 5 Kidney Reflux anymore.  She didn’t even have Kidney Reflux anymore. But we would have done an unnecessary third surgery in Lily’s first year had we not located one doctor in Boston who listened to us, and who gathered as much information as he could. The first doctor may not have been wrong about the severity of Kidney Reflux, but he seemed to be marking off boxes on a checklist rather than looking at the details of our daughter’s condition. And when my wife asked about the concerns over surgery, he was too busy with his flow chart.

And he wasn’t listening.

To make a long story short, Lily is now a beautiful, six-year-old fireball who has been navigating for five years what turned out to be the biggest challenge of her life.



At about eighteen months of age, after getting through all of the physical demands mentioned above, she began to develop normally. We read books with Lily. We sang and played “Itsy Bitsy Spider” with Lily. She called us “Ma-Ma” and “Da-Da.”  We treasure the way she should say, “Hi dare!” when she greeted people who walked in the room.

And then she stopped talking. She stopped relating. And she retreated into a world all her own.

Prayerfully, we started a new journey of doctors and fact-finding and tests to discover the problem and accompanying solution. The answer that kept returning was a common one today: Lily must have Autism.

But when we did our homework, we found major discrepancies between Lily’s condition and Autism. Most importantly, Classic Autism is a condition, from birth, that causes children to have an inability to connect in many of the ways Lily had connected.  She had been a typical child, and then she regressed.

But no one seemed to be listening.

We asked our Pediatrician how Lily could somehow lose abilities and then be labeled with a disorder characterized by, “the disruption of normal brain development early in fetal development caused by defects in genes that control brain growth.”  She responded that, while it might seem that she was losing abilities, she likely was just “moving on to other skills.” Does that make sense to anyone? We responded by “moving on to another doctor.”

One who would listen.

We have since learned that some of the amazing children who have been given the Autism label may clearly have an issue related to the spectrum.  They are vibrant people who will adapt in life and make life for everyone around them richer.  We do not seek to demean or dehumanize those who really own the diagnosis.

However, we’ve grown convinced that thousands (perhaps millions) of children are given the diagnosis of Autism because it’s a convenient label that explains away symptoms and requires no attempt at recovery by the doctors who treat them. It’s a disease that doesn't require the doctors to listen. While I seriously doubt it after years of learning more, Lily may very well have some form of Autism. And if she does, we will embrace who she is and what she can become. We will not, however, surrender to a lazy label given by physicians who are in too big of a hurry to look further into her needs.

Since Lily regressed in 2008, we’ve been on a journey that has included over 200 blood tests, 100 doctors, 12 specializations, four states and 10,000 miles of travel, dozens of therapeutic strategies, and at least six special diets in search of something that might help. Lana has read or studied over 150 different books on the various issues that Lily has presented.

As a result of a relentless search, we’ve come across some really great people in the medical field for which we are grateful. Dr. Michael Goldberg was the first doctor who openly questioned her Autism diagnosis and set about seeking treatment.  While he didn’t get her to where we hoped, he opened the door to new and innovative questions to ask from a scientific perspective.

And now, we have found Dr. Souhel Najjar, our Neurologist from New York. Dr. Najjar is the Head of the Neurology Department at Staten Island University Hospital, and the Associate Professor of Neurology at New York University Hospital. He’s written extensively on diseases of the brain, and become famous for solving some seemingly incurable cases in the past decade. And Dr. Najjar, through an immense five-day battery of tests last month, has already gathered more useful information about Lily than we had to this point. He shared this with us in a conference call yesterday:

- Tests indicated that Lily has dangerously low levels of IgG and IgM immunoglobulins in her blood – essential elements in our immune system that help us fight off infection. We knew this already, but he was the first one who showed why this could not have been circumstantial evidence, nor the result of a birth defect. Something is causing these levels to drop.  He demonstrated how it is causing her body to react with corresponding low levels of white blood cells, “p-cells”, and manifested infections of skin conditions and brain dysfunction. She will travel to NYU Hospital again next week for a week’s worth of IgG ifusions through an IV, and then we will follow up with additional IV IgG’s every two weeks for the next two months – finally giving our little girl the tools she needs to fight infection.

- We will continue with the same medication she has been on to help with symptoms related to her condition, but because he is a brain specialist, he wants to address the issue at the source. Apparently most meds never impact the brain, because of the powerful BBB (Blood Brain Barrier) that is intended to protect our control center from foreign bodies. So he immediately prescribed a drug that is specially designed to cross the BBB.

Dr. Najjar was careful to say that he is not guaranteeing this will be the correct treatment, but said he felt strongly this is what we should try first. He said that he would do everything he can to help her – and if this doesn't work, he has next steps in mind that would be based on what we observed between now and then. In the meantime, he would be closely watching and listening.

Much of Dr. Najjar’s published journal research is available online, and I had already read through parts of it. When I asked if there was one in particular that we should go over to get a better understanding of what Lily was going through, he said something that I can’t get out of my mind because it is so unlike what we’ve heard all these years:

“You can read them, and there are a lot of interesting papers.  But there is no reason to get caught up in any one of them.  Because every brain is different. And Lily’s needs will be different from anyone else’s. There is only one Lily.”

And that’s when it dawned on me. Why is this one New York Doctor so adept at finding answers and solving complex medical mysteries when no one else can?  Why has he appeared on The Today Show and Katie Couric and Oprah because of what he’s done?   Is he a genius?  Maybe so.  But his VERY BEST attribute is the one that many doctors seem to have forgotten…

Dr. Najjar listens.

He pays attention to every detail.

He ties those observations all together.

And he bases treatment on the patient rather than the protocol.

So if you are in the medical profession, I have one plea for you: you may have all the degrees in the world, and you may have brilliant ideas.  But until you learn to listen to your patients, you may be robbing them of exactly what they need.

I’m hardly a perfect listener myself, and in my own work as a pastor, I am trying to apply these same principles.  But if Lily begins to recover in the weeks ahead, I will be tempted to pay a visit to a Dermatologist who said Lily just had ordinary skin issues rather than looking for an underlying diagnosis for why they were constant and pervasive.  And I will go see an Immunologist who never did IV IgG’s because she decided that, while Lily obviously had low levels, she “seemed to be adapting to those levels okay.”  And I will go see a Pediatrician who said Lily was just like lots of other kids who seemed to be progressing normally but never really had the ability to function to begin with.  And then I’m going to write to anyone who will listen that their condition, like Lily’s, may not be as hopeless as they thought.  They only need to find a doctor who will do the one thing that can change everything.

They need to find a medical professional, as busy as he or she may be,

who will listen.

Sincerely,


Ryan and Lana Rush

Proud Parents of Lily


28 comments:

  1. Amazing post. Praying for your family and anxious to hear what the happens in the upcoming weeks. Much love!

    ReplyDelete
  2. Wow. We too, have experienced otherwise top-notch doctors who were so intent on doing things their "one way" that they simply would not (or could not?) listen to their patient's unique issues , and it is an exasperating experience. In March, my type-1 diabetic husband had a large brain tumor removed. We had a great surgeon, but because he would NOT listen to the particulars of my husband's diabetes management, hubby nearly died on the table when his blood-sugar levels plummeted, just as we had warned this surgeon could happen. We had given him all the information for how hubby controls his blood-sugar, and how the anesthesiologist could, too, but for over half an hour, while they frantically had to get hubby's endocrinologist on the phone right there in the operating room, and he talked them through how to correct his blood-sugars, they were really not convinced he would survive the surgery, and the complications both during and after the surgery that this caused were very stressful, even after the successful removal of the tumor. Hubby is continuing to recover very well, and we are grateful to our endocrinologist, who listened to us, and was able to provide life-saving advice to the neurosurgeon, but if this brilliant surgeon had only listened to us in the first place, many problems could have been avoided in the first place. Our prayers and empathy for your frustration - we have an understanding of how that feels, and sincerely hope that Dr. Najjar's listening will prove to make all the difference for Lily.

    ReplyDelete
    Replies
    1. My gosh - how scary! And how easily it all could've been prevented. Thank you for your comment and kind words. Glad to hear that your husband is recovering nicely.

      Delete
  3. There are so many ways kids can be! I'm so very thankful that our daughter's neurosurgeon and pediatrician listen well. There are different ways of listening well. The pediatrician has gotten to know me over time and trust my experience (four kids) when I say something is zebra level wrong. The neurosurgeon was the one who first encouraged me to trust that if I thought something was wrong, I would likely know before the doctors (he mentioned a specific peer reviewed study on specific condition but it has been likely to help docs listen as this has been brought up by fellows and residents in years since). I've seen super smart doctors who didn't listen well change over time, so experience also helps, it just takes time. I am thankful we live in an information age and patients/families have more cooperative relationships with doctors.

    ReplyDelete
    Replies
    1. I agree - I strongly desire to have a long term relationship with a doctor who knows me and my family, where trust and communication are a 2 way street. I just wish it didn't have to be so hard sometimes!

      Delete
    2. Sounds like Dr Najjar is a keeper! :)

      When facing doctors who don't listen well, I continually hope that my child becomes less complex (suppose it is a mantra of sorts). I haven't known DD's neurologist long enough to trust her yet, but she has listened very well and her actions have reduced the time we spent in limbo and treatment for a recently dx condition has made a difference. My coping is learn as much as possible and figure out quickly when a doctor might be a good fit, or not. I have backup choices but sometimes they are not the best listeners. I don't know how to shorten that time, since it requires learning about the various conditions, in painful detail sometimes understanding why something doesn't apply to my child. There should be a recognized type of mini-medical degree for parents of special kids - you've definitely gone through the education.

      Delete
    3. Oh my word - a mini medical degree - isn't that the truth?? Thanks for the comment!

      Delete
  4. AMEN!!! And continuing to pray for God's very best for Lily. She is blessed to have parents who are so diligent in doing whatever they can to help her in every way they can.

    ReplyDelete
    Replies
    1. Always appreciate hearing from you, Miss Mary - and know that you are praying diligently.

      Delete
  5. I made a comment on Ryan's blog. This was a great article. Continuing to pray.

    ReplyDelete
  6. Whoa did the goosebumps hit what Dr N said about Lily. :)

    ReplyDelete
    Replies
    1. Kimberlee, We recorded the phone conversation so we could go back to hear anything we might have missed and Ryan and I both get teared up every single time we hear him say it. :)

      Delete
  7. I agree with so much of what you're saying. I wish doctors would listen better. As someone with a chronic illness I have gathered a pretty good team that usually listens to me. What I really wish you had written is how lucky you are to have the resources to travel all over the country to get the best treatment. I could find a better doctor 1000 miles away but who will pay for my transportation, room, and board? What about insurance that won't cover special treatments when standard treatments are available? Most of us can't travel just to get surgery with a smaller scar. We have to accept the treatment available to us. Probably even most of your parishoners can't even dream of the kind of access you've had.

    ReplyDelete
    Replies
    1. Jeanne - you made some interesting points in your comment. So interesting in fact, that rather than answer them here, I'm just going to write a blog post on it. Hopefully, you'll see that in the next few days. Thanks for taking the time to comment.

      Delete
  8. Oh I have goose bumps. I have said for years (okay not years like you have gone through but still) that I wish Boo's doctors would listen and TALK to one another. To have so many docs and not one of them converse is always an amazement to me.

    I hope you find the answers Lily needs. For me I am going to remember that every brain is different. I think that is a great place to start.

    ReplyDelete
    Replies
    1. Kerri - that's another point that we didn't make in our letter - communication. When you have special needs kiddos, there is usually no one doctor that cares for them. We have "Team Lily" and I'm sure you have "Team Boo". I can't tell you how many times I've wished we could have "team" meetings once a month so that everyone is on the same page and can share information with one another. Wouldn't that be great?? Girls can dream, right??

      Delete
  9. How do you go about researching for different doctors that have experience with certain special needs? My ex 24 week micro preemie (now 11 months actual) is still in the ICU at a Childrens hospital over 2 hours away, and she is actually worse now than she was 5 months ago, when she should have been sicker. She is trached, and vent dependent, and her lungs are just not improving, like I said, worse than 5 months ago. We need to find someone that can help her, and I am not sure where to start. I am so thrilled for your family that you found doctors that listen. That is so reassuring to hear that there are some out there that still do! Any help, or experience, or insight you can give me would be most appreciated. Thank you in advance, and blessings to your family.

    ReplyDelete
    Replies
    1. We often just google "best (fill in the blank) in the US". So I might start by googling best NICU, or best PICU, or best hospitals for micro pre-mature babies. I don't know where you live but Texas Children's Hospital in Houston, TX is where we went for Lily's open heart surgery and they are considered a "medical mecca" for many people around the world. Boston Children's is also a wonderful hospital. I'm going to do a little research for you myself so I really hope you check back to see this message and then check back again in 24 hours and I may have a little more info for you. You can also feel free to email me lanarush@austin.rr.com if you want to share anything more privately. We are praying for you.

      Delete
  10. I have a one and only boy of my own-10 years old, with no diagnosis except "autism" which everyone acknowledges is simply a label. Somehow it doesn't relate to all of his other critical health issues. We have tried everything, with the recent results of a DNA test which returned no abnormalities. I applaud you for keeping searching when the doctors encourage you to simply accept, and pray for Lily's absolute best.

    ReplyDelete
    Replies
    1. Thank you, Teena! Good luck in your search for answers and please let me know if I can help in any way.

      Delete
  11. Wow! I came back after seeing your post about "Read the comments". I have finally gotten to the point when I am with docs that I almost always say two things to them that tend to stop them dead in their tracks and really think about things. The first is, "If this were your daughter, what would you be doing right now and please do the same for mine." and two, Tess is not the person you have read about in your medical books who has special needs. Don't tell me that 'kids like Tess do this and this and this.' This is NOT a kid like Tess. This IS Tess. Let's start from there."
    And I am keeping you all close in prayer and just so excited for Lily!! :)

    ReplyDelete
    Replies
    1. That's one of the things I love most about Dr. Najjar - he has said twice now, without us having to ask, "if Lily was my daughter, this is what I would do". That's a really big deal that I think many doctors don't consider. Tess and Lily are definitely "one of a kind" kids! :) Thanks as always for your prayers and encouragement.

      Delete
  12. Oh precious family! I am praying for you all, for Lily, for the doctors.
    I hope I have been somewhat good at listening to you. I definitely recognize you are the ones who know Lily better than anyone. I hope you know I am always eager to hear your insight and input. I will also commit to "listening" more fully by reading your blog on a regular basis. I am proud of you for digging deep to find the answers. I am grateful for you all in my life.
    Thank you.

    ReplyDelete
    Replies
    1. You ARE a great listener! And you have always been so open and inviting of my opinions - you've never made me feel like I'm "in the way". That's one of the many reasons I'm so happy you're on "Team Lily". We are so blessed to have you as her teacher and I just KNOW that this year is going to be great! :)

      Delete
  13. Just FYI - We just went to our Neurologist, Dr. Lindsay Elton at Specially for Children and she impressed me with her listening skills. She actually said these things. "Tell me what's on your minds and on your hearts." "I want to make sure I say all this in a way you can understand." "Do you have any questions?" "Is there anything else we need to talk about?" ;)
    Praying for you all.

    ReplyDelete
    Replies
    1. Thanks for the information, Jessica. I'm always glad to know about good local doctors - I get asked for referrals a lot. And she does sound impressive. Happy you found her. :)

      Delete

Related Posts Plugin for WordPress, Blogger...