Letter to Sarah Jane from her Daddy
June 10, 2010
Dear Sarah Jane,
I went to sleep five years ago this very night with incredible optimism and joy. You had arrived into this world five days earlier, happy and healthy, and we were filled with so much anticipation; our world was eagerly waiting for your arrival. I was married to your mother; I had achieved a successful start in my career and earned degrees from Rutgers College, Fordham Law School, and New York University Business School. I had developed a world-class rolodex of professional contacts working full-time as a political consultant helping to elect governors, senators and presidents. I was preparing to launch the next stage of my life and you and your mom were the central part of it.
What I didn’t know was how so many lives, and more importantly, your life, would forever change that night. That night, the baby nurse we hired to help teach us how to care for you and who we invited into our home, would violently shake you for no reason, breaking four of your tiny ribs, both of your collarbones and causing such a severe brain injury that you would lose over 60% of the rear cortex of your brain.
It was over a week before we found out what had been done to you, after you were readmitted to the hospital where you had just been born two weeks earlier. What I recall most vividly from that time was watching the hospital staff poke and prod you to establish an IV in your arms and feet. Your mouth was wide open and tears were running down your face, yet you could not scream; you had no voice. I promised you I would always be your voice when you couldn’t speak for yourself. You spent almost a month in the hospital as they stabilized you before releasing you back into a world not capable of dealing with the complexities of such an injury. The doctor told me as they discharged you from the hospital that your injury was an 8 on a scale of 1 to 10 and that you would likely never walk or talk. The correct information should have been, “we don’t know!”
Fortunately, the New York City Police detectives and the Manhattan District Attorney’s office did such an incredible job investigating and prosecuting the Monster who shook you that we were able to focus completely on you and your care. The Monster eventually pled guilty to harming not only you but another little baby right before you (thankfully, this baby only sustained a broken leg). The Monster was sentenced to 10 years in prison and still sits there today.
When the news broke about such a heinous criminal act, it was featured on the front pages of the New York Daily News, the New York Post and told in newspapers all over the world. Between the local news broadcasts, the TODAY Show, Good Morning America, and CNN, your story was told all over the world. We received thousands of prayers and good wishes from people as far away as Japan and Greece (where you were originally conceived on the island of Mykonos).
Sadly, the strain on my marriage to your mother was too great, as is the case with 85% of families in the aftermath of such a trauma (I hate being a statistic), and it ended with us getting a divorce. This was a very difficult, expensive and challenging experience for all of us. While I ended up with sole custody of you, it is important for you to know your mommy has never stopped loving you and wanting what’s best for you. Always remember to ignore people who will judge each of us and be critical of these decisions: focus on the positive in people and build upon the positive. It is always easier to be negative and deliver addition by subtraction!
One of the first things presented to parents confronted with a child with special needs is the essay, “Welcome to Holland” written by Emily Perl Kingsley. This essay speaks about the excitement for a well-planned vacation to Italy and the disappointment when the plane lands in Holland instead. The metaphor is the experiences of raising a typically-developing child is the trip to Italy and the trip to Holland is raising a special-needs child instead. The message of the essay is in the end that the “trip” is well worth it even though it’s not where you originally expected or wanted to go.
After you were discharged from the hospital, you were immediately enrolled in the Early Intervention Program for your intensive therapy needs. This has exposed me to some of the most amazing angels who are walking this planet: the therapists who come into our home each week and work with you as if you were their own child. I had never before witnessed such compassion so closely. In addition, we put together a medical team whose mantra was to not create false expectations for you and yet still remain hopeful!
The hardship also gave me greater insight into the tremendous value of family and friends. My oldest sister, your Aunt Cindy, has been nothing short of a saint (she hates it when I call her “Saint Cindy”). In your first year of life, she took a reduced work schedule from her professional career to spend two days a week taking care of you and has been by your side ever since (not to mention the three nights a week she continues to spend looking after you as well as taking you to the park just about every weekend). Every little girl needs an Aunt Cindy! My other sister Mary and her oldest daughter Shannon (my goddaughter) also pitched in considerably by traveling from New Jersey a couple days each week to help out during that difficult transition time while we were searching for a full-time nanny for you. In the meanwhile other family and friends chipped in with either moral support or significant financial support to keep me afloat – I could never thank them enough. We were very lucky in finding your daily angel, Vicky, who works so hard for you every day as your nanny. I couldn’t imagine leaving my little piglet each day with anyone else. Not only does she love you as if you were her own blood, she understands your needs (and doesn’t always give in to your Diva demands). Vicky and her family have become part of our family and we are the better because of it.
Though you weren’t yet crawling, walking or talking, as you approached your first birthday I noticed how irritated you became when I sat down holding you. After a couple of weeks of this, I realized you wanted to be mobile so I used a moving dolly and put your torso across the wood planks to give you the trunk support you needed and you moved across the floor on your own for the first time ever! You were so excited you moved around the apartment like a bat out of hell! That led to me develop a walker for you made out of PVC piping and designed to fit over the treadmill so you could start walking on your own (at least one of us is using the treadmill). Today, you have a newly designed walker courtesy of your Nanni contacting a very generous company who custom built it for you.
As I got settled into the daily routine of caring for you, I began reading as much as I could about neuroplasticity, neuroinformatics and anything I could read about the brain (I can humbly admit to you I only understood about 10% of what I was reading). However, after reading the inspirational book, The Brain That Changes Itself, I realized how little we really know about the brain. We probably know about 5% of what we will eventually know about the brain. As I thought about it, I figured we know relatively the same as we knew about cardiology in the 1850s!
As I began discussing with your doctors, therapists and researchers I knew about what I was finding out, it also became clear there was no single repository of knowledge about the brain. Folks were operating in their individual silos and brilliant people all over the world were working in similar areas without knowing what the other was doing. It reminded me of the fractured computer science field throughout the 1950s and 1960s. I fast-forwarded 50 years and asked, “Where are the breakthroughs occurring today in those areas?” And the answer was using Open Source Principles; the idea of shared knowledge and collaboration.
Excitedly, I starting contacting people all over the world to find out who was using these Open Source Principles in the field of neuroscience, and specifically pediatric neuroscience, since I figured that’s where the breakthroughs would occur for you! After an extensive search, I came to understand that no one was using these principles. The National Institutes of Health began a project in the 1990s called the Human Brain Project but you will be graduating from Oxford by the time they complete it! And as I tell people all the time, I am not a very patient person when it comes to helping you!
After hitting such a disappointing wall, I knew I had to take matters into my own hands. So I decided to do something which had never before been done in medicine or science: I decided to put all of your medical records online in an open source format for the world to have complete access to them. Selfishly, I thought I would get more eyeballs on your case and it would lead to a scientist in Switzerland at 3 a.m. reviewing your EEGs (instead of watching NCAA football) or a physical therapist from Florida watching your therapy sessions online and suggesting a different rotation, method or therapy altogether. I called this the Sarah Jane Brain Project and it is what led to me creating The Sarah Jane Brain Foundation.
While developing Phase 1 of the Sarah Jane Brain Project, one of your doctors, Dr. Spivak, commented that if I could get other families who have children suffering from a traumatic brain injury like you, to participate in this “Open Source Initiative,” it would be extremely valuable information and lead to advances in research and treatments. Traumatic brain injuries are caused by motor vehicle incidents, falls, sports concussions, child abuse as well as blast injury from war.
Another one of your doctors said to me, “Patrick, I know you’re a lawyer and have considered the HIPAA legalities of doing this, but have you ever considered how Sarah Jane may feel about this someday?” What an excellent question he posed. My response to him was, “It will be the happiest day in my life when Sarah Jane comes home from high school some day and starts cursing and hollering at me because her friends were making fun of her at school because they knew she didn’t poop for five days when she was just three years old!” You see, even though right now you cannot crawl, walk or speak words yet – I fully expect you to do so one day and I am looking forward to that day in the future when you can live as normal a life as possible.
So we launched Phase 1 in October 2007, by posting all of your information online and the response was amazing! We received positive feedback from scientists from Europe, South America, NIH, MIT, Canada – basically all four corners of the planet. Clearly, we knew we were onto something so we quickly began moving into Phase 2 which involved recruiting other families.
After launching The Sarah Jane Brain Foundation I became amazed at the generous responses of some and the lack of response by others. There was one couple I had never spoken with before but after reading about what we were doing, they sent an unsolicited donation of $10,000 to support our efforts! Meanwhile there were billionaires I had gotten to know during my previous career in politics who wouldn’t even return a phone call or an email (however, many of their secretaries would tell me they were praying for you, and some of them even made donations themselves).
As I began speaking with families all over the world who had a child with a traumatic brain injury, it became really clear that EVERY single family is stuck reinventing the wheel in all aspects of tending to their child. It also became clear that 85% of what all families go through was the same stuff, however, the system of care was arbitrary from state to state, random from one school district to another and a complete crapshoot from one doctor’s office to another. Instead of spending valuable resources on the 85% which could be standardized, we really should be spending our time and energy on the 15% that makes each one of our children completely unique.
So we expanded Phase 2 to begin developing an Advisory Board of experts who could help us “standardize the wheel”. While I thought it would take years to put the group together, I initially reached out to one of the leading researchers in the field of pediatric traumatic brain injury, Dr. Keith Yeates from The Ohio State University, since he had put a conference together the year before on the topic and I wanted to piggy-back off of his experiences to organize my own conference and use it as a networking tool. After an hour on the phone with him, he said, “It sounds like you want to create a pediatric traumatic brain injury model system?” I said, “It took me an hour to say what you just said in a sentence!” Dr. Yeates responded with, “You can count me in!” From that point forward, we were off to the races.
Dr. Yeates then explained there were many colleagues of his who have been in the field for decades talking about this but they have had little success in getting political support or funding for the pediatric community. Obviously, a light bulb went off in my head as I explained to Dr. Yeates my previous professional career was as a political consultant and fund-raiser. Having raised over $500 million for various political candidates and causes during my career, I explained to him that I knew politics pretty well.
And it didn’t make any sense to me whatsoever. Dr. Yeates explained that pediatric traumatic brain injuries are the #1 cause of death and disability for American children and young adults. As a matter of fact, the numbers are simply staggering, with over 3 million new brain injuries occurring EVERY year! As I discussed the political problem with him, it dawned on me that political ears listen and respond to victims and families of victims. It’s just the nature of the system (the media is the same way). And since whenever this happens to a family, it is such a blow to the family, never mind the family structure, it is very rare to find a family with the wherewithal to become an advocate. And those few families who do become advocates, they tend to go into the prevention organizations like Mothers Against Drunk Driving (MADD) and the National Center of Shaken Baby Syndrome. The idea of stepping out of your own personal chaos and taking on everyone else’s chaos, you’d have to be somewhat certifiable. Yet this is exactly what we have taken on at The Sarah Jane Brain Foundation (and it is why your daddy has been labeled “certifiable” multiple times over by now).
Within a month or so, Dr. Yeates connected me with a couple of more of his colleagues: Dr. Roberta DePompei who is one of the leading speech pathologists in the country, and Dr. Ron Savage who is the President of the North American Brain Injury Society. As I was walking Dr. DePompei and Dr. Savage through what I was trying to create, they suggested we identify some of the federal monies set aside for traumatic brain injury (and typically allocated towards adults) and do a best- practice study and a longitudinal study, since one had never been done before on kids with traumatic brain injury. I was absolutely shocked at their suggestion. Basically, it told me the advice and care we were getting from the medical community for you was based on antidotal information, and at best, evidenced off of adult research. Newsflash: kids are not little adults! On top of that, while we have longitudinal data on flies with one wing, we have no long-term data on the children suffering from traumatic brain injury!
After I got past my initial outrage (but to this day my blood still boils when I think about the lack of resources our federal government has put towards kids with brain injuries), I explained to them that it didn’t make sense to take away resources from adults with brain injuries since they are also underfunded. Nowhere near the degree of kids though: if adults with brain injuries are allocated $100, kids get 2 cents! However, when you compare it to other diseases, the numbers are nothing short of amazing.
According to the CDC, there are 35,000-40,000 new cases of HIV/AIDS in the United States annually with over $3 billion allocated annually in the federal research budget. There are an estimated 565,000-1 million cumulative cases of autism in the country with the federal government finally allocating $1 billion last year in federal research. With over 5+ million cases of NEW brain injuries between youth (3+ million) and adults (2+ million) EACH year, however, the average federal research budget for the entire brain injury community is only $80 million annually. No, I didn’t mistype the number – it is really ONLY $80 MILLION annually. You don’t have to be a math major like I was to compound that over ten years and quickly realize why families with a brain-injured child are living in chaos!
So we set out to create a Pediatric Traumatic Brain Injury Plan which would be completely focused and funded around children, young adults and their families. There are many more complexities with this population: they have to reintegrate back into their schools, their homes and their communities; they have siblings who need to understand the changes to their brother or sister and many of the caregivers have marriages that collapse under the incredible pressure, just like your mommy and daddy.
The next thing I knew, I found myself at the North American Brain Injury Society’s annual conference in New Orleans meeting a couple of dozen of their colleagues and the Advisory Board of The Sarah Jane Brain Foundation was beginning to grow. I went to lunch with a half dozen of them and the first question they asked me was, “Would it be okay to expand the coverage to include all acquired brain injuries, not just traumatic brain injuries?” My response was I had no clue as to what the difference was or why they wanted to do this. They responded saying, “More than 95% of this continuum of care you are looking to standardize would benefit this smaller population that is usually and arbitrarily left out of the support systems and definitions. These are the kids with brain tumors, strokes, meningitis and other non-traumatic causes of brain injuries.” I immediately said we would change it to a Pediatric Acquired Brain Injury Plan (PABI Plan). You should have seen the look on their faces – they were shocked that it only took 90 seconds to make the change. I said this was a good opportunity for us to get to know each other; the reason I was sitting down with them was because THEY were the experts and I was going to rely upon their expertise (heck, I didn’t even know what an acquired brain injury was before the conversation). Secondly, I said what if you were suffering from one of these non-traumatic causes and were arbitrarily left out of the support systems, that wouldn’t be fair. And finally, I told them the reason I was 100% confident of our ability to get this through politically is we were on the side of the angels, however, as soon as we started doing things in an arbitrary manner we would lose all of our leverage! So their task was simple (though not easy): to develop the best PABI Plan possible for the millions of American families without taking anything else into consideration. I didn’t care if one state defined an adult as 18 while another as 21. They asked me what federal agency I expected the money to come from to fund this plan, whether it was NIDRR, NINDS, HRSA, as well as a dozen other acronyms that gave me a headache. I answered with a question, “What difference does it make where the money comes from to develop the best plan possible?” They realized it didn’t matter where the monies came from and immediately began working on the first-ever National PABI Plan.
We quickly began reaching out to more experts from all over the country to join our Advisory Board to help us create the PABI Plan and within several months we had folks from just about every major medical institution from MD Anderson and Johns Hopkins to Mayo Clinic and Mount Sinai and research university from Harvard and Yale to UCLA and the University of Virginia. Our International Advisory Board has grown to include more than 200 experts from all over the world now (there is a story behind each one of these incredible people). I tell them all the time that it is my job as your daddy to do what I am doing to maximize your potential, but they get up every day and chose to do what they are doing and I cannot thank them enough!
More than 75 of these experts came to New York City on January 8-10, 2009, to finish the first draft of the National Pediatric Acquired Brain Injury Plan which develops a seamless, standardized, evidence-based system of care, universally accessible for every PABI family in America regardless of where they live! The PABI Plan was organized into seven Categories of Care: 1) Prevention, 2) Acute Phase, 3) Reintegration Phase, 4) Adult transition Phase, 5) “Mild” TBI, 6) Rural/tele-health and 7) the Virtual Center of Excellence. Within the PABI Plan, each Category had its current status summarized along with the problems and the proposed solutions as well as the translational data needed to ensure the solutions were evidence-based.
In addition, since every state is different with different demographics, geography, financing, laws, infrastructure as well as different causes of brain injuries (for example, there are more near- drownings in Florida than in Montana, and more snow-skiing incidents in Colorado than in Hawaii), the Advisory Board decided to select one State Lead Center of Excellence for every state plus the District of Columbia and Puerto Rico. These State Lead Centers would have three responsibilities: 1) to develop a Master PABI Plan for their state, 2) to establish a high-level case management system so as soon as an acquired brain injury is diagnosed they would attach themselves to the family and never let go, and 3) each State Lead Center would have a Regional and/or National responsibility around one of the seven Categories of Care.
We announced the PABI Plan within the first letter ever sent to President Barack Obama at 12:01 p.m. on his Inauguration Day, January 20, 2009. Someday the letter will be in the Smithsonian (or perhaps President Obama’s Presidential Library: whichever ends up with the higher bid). I have a copy of the letter on our website.
In the spring of 2009, at the same time that we began an application process for institutions and organizations to request to become one of our State Lead Centers, we launched a nationwide public awareness campaign with the “American PABI Heroes Tour”. This tour took us from Boston to New York City to Washington, D.C. to Raleigh to Atlanta to Miami to Birmingham to Nashville to Columbus, OH to Chicago to Dallas to Denver to Las Vegas (we just stopped over but I cannot tell you what happened in Vegas) and ended in Los Angeles. We drove over 11,000 miles in two weeks. We held either a musical competition and/or a professional panel discussion around one of the Categories of Care in each of these cities. Our Director of Special Events, Jen Glaser, did an amazing job organizing it (I am surprised she still speaks to me) and recording artist Kristy Kay (who is also the voice of Barbie) was our Master of Ceremonies throughout this national tour (what a trooper she was to travel across the country with us). Kristy Kay is an amazing individual and one of your biggest fans!
Then on June 5, 2009, my birthday present to you last year was announcing the largest healthcare collaboration in United States history dealing with pediatric brain injuries: one institution in every state plus D.C. and Puerto Rico was selected as our State Lead Center! This was a major accomplishment in starting to implement the PABI Plan. Some of the leading institutions in the world applied and were selected as the State Lead Center for their respective states.
Then on August 18, 2009, as a birthday present to the Honorary Chair of our Advisory Board, Marilyn Spivack (she was the founder of the Brain Injury Association of America), we operationalized the PABI Plan and converted it into a $930 million multi-department federal grant proposal.
However, the only way to achieve the fundamental changes needed to advance our knowledge of the brain 50 years in the next 5 years and implement the PABI Plan, we need to go through political system. So on October 13, 2009, we had a concurrent resolution of Congress introduced by Representative G.K. Butterfield (NC-1) along with 47 original co-sponsors to 1) identify PABI as the leading cause of death and disability for American children and young adults up to 25 years of age, 2) have Congress endorse the PABI Plan as THE plan to prevent, identify and treat these brain injuries, and 3) encourages federal, state and local governments to begin implementing the PABI Plan. In less than six months we secured over 100 Members of the United States Congress to endorse the PABI Plan by co-sponsoring the measure. This concurrent resolution is now sitting on the desk of one Member of Congress to determine if it will move through the Energy and Commerce Committee. One single Member of Congress has the power to either allow for this concurrent resolution to be voted on or not – this is the most important step in the entire process so far! I am hopeful you will receive a belated birthday present from this Member of Congress any day now and the measure will be passed in the House and Senate and create the political consensus around the PABI Plan. The actual name of the measure is House Concurrent Resolution Number 198.
Your mother and I had the foresight to save your cord blood during your birth and have it stored with Cord Blood Registry. A wonderful doctor at Duke Children’s Hospital named Joanne Kurtzberg has been utilizing the stem cells within the cord blood to help other children with brain injuries. We were very fortunate when a mutual friend introduced us and asked if I had any interest in this procedure. We immediately jumped at the opportunity and last July we drove you down to Durham, North Carolina and had your cord blood reinfused into your system with all of those stem cells. As I told everyone, we were not relying upon science by itself and we started a worldwide novena to Mother Theresa to intervene on your behalf. Mother Theresa is in need of one additional miracle before she can be canonized as a saint. Well as soon as you start walking and talking, Mother Theresa will get her wings. Another remarkable occurrence was when a friend from law school offered her own daughter’s cord blood for you when she found out about your injury. It was one of the most amazing offers I had ever received (thank you Courtney).
While we were waiting for President Obama to send us the check for $930 million to fund the PABI Plan and the Members of Congress were deliberating signing on as a co-sponsor of H.Con.Res. 198, we were continuing to implement pieces of the PABI Plan where we could. That led us to launching the Zackery Lystedt Brain Project during Super Bowl week this year in conjunction with the American College of Sports Medicine. This effort is named after a brave young teenager who was the star athlete when he 14 years of age. Zackery was sent back into the game after sustaining an initial concussion and later collapsed seconds after making the winning play of the game, suffering a second and permanently debilitating brain injury. He and his family along with local advocates in Washington State created legislation to prevent these types of devastating injuries from happening again. On May 14, 2009, Governor Christine Gregoire signed into law the Zackery Lystedt Law which was unanimously passed by the Washington Legislature. Oregon passed similar legislation a month later.
The Zackery Lystedt Brain Project’s mission is to advance the core principles established with the Zackery Lystedt Law throughout the country: a) educate youth athletes, their parents and coaches about the risks associated with head injury and concussion, b) immediate removal from play or practice if there is a suspicion of a concussion or head injury, and c) athletes can’t return to play or practice until they have been evaluated and cleared by a licensed health care provider who has been trained in concussion management. Through passing similar legislation in every state, increasing public awareness, education and training and advancing research to better prevent, identify and treat these brain injuries, we will fulfill our mission.
We have also begun developing the Virtual Center of Excellence which will start off with the first- ever online Registry for families and friends who have children with brain injuries as well as professionals who work with them. It will quickly grow into an online portal of resources, information, support, advocacy and research for brain injury. By sharing our experiences and information we will create a virtual ecosystem for the entire brain injury community as well as advance our knowledge of the brain 50 years in the next 5 years!
While looking at additional ways to generate revenue as well as advance our efforts, we decided to establish the first-ever National Legal Advocacy Organization devoted to families who have a child with an acquired brain injury. This legal organization is going to provide legal and other advocacy support services on a sliding scale basis across the legal spectrum for the millions of these families. The seven Legal Categories of Care we are aiming to provide services for include: criminal justice, special education, family law, personal injury, social security/disability, insurance litigation and estate/life planning. Once this is fully functioning throughout the country, it will generate more than $100 million of revenue annually which we will use to subsidize the legal and advocacy services for those families who need financial assistance.
You have continued to face many challenges over the past five years. Whether it was controlling your seizures and regulating your medicine (you have been seizure-free for a couple of years now), regulating your constipation issues (which is an ongoing challenge), or figuring out the best way to establish a consistent sleeping pattern, you have been an amazing little trooper. While other children your age are playing at the park or going to their friends’ homes to play with dolls, you are spending hours every day doing physical therapy, occupational therapy, vision therapy, feeding and speech therapy as well as traveling to and from different doctors’ offices. You are an amazing little girl and every day you are an inspiration to me! Your smile is contagious and your nickname at school, “Diva” is clearly appropriate when you pull all our strings to do your bidding!
Recently I have come to meet and know one of the greatest neuroscientists in world, Dr. Rodolfo Llinas, who is the Chairman of Physiology and Neuroscience at New York University School of Medicine. He has taken a considerable interest in you and is working with me to figure out what is going on inside your brain. Through a completely different pathway, I have also recently met a wonderful doctor, Victor Pedro, who has been applying the research that Dr. Rodolfo has been doing to brain-injured individuals and has begun working with you to develop a specific plan for you.
As I went to sleep five years ago, hopeful, optimistic and peaceful, I will do so tonight; just with different challenges and different dreams! My old departed friend, Marty Silverman used to say to me all the time, “Things work out best for those who make the best out of the way things work out!” I fully expect the world of neuroscience to be so different five years from now that you will be reading these letters yourself.
Good night my little piglet! I love you!
Your Daddy (Patrick)