Note: If you’re just dying to know an update on Lily’s New York saga, you can skip down to the end of this post.
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 children 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.
Ryan and Lana Rush
Proud Parents of Lily