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Why can’t (the information) all just get along?

Why can’t (the information) all just get along?

Dear Eve,

Mommy went out of town for a quick trip for work this week.  But it was a trip for you too….and for the thousands of children in our country, like you, who have to spend alot of time seeing doctors to help you be healthy.  Your doctors need to share important information about you, not just sometimes, but ALL the time.  Right now, they don’t do that.  Sometimes they don’t want to.  Sometimes, they can’t. Either way, this is bad for you. Mommy and daddy want to help make things better. So do alot of other very smart people.  We need to keep at it until we can get – right when we need it – all the information about your health, your medicines, the pictures of your heart, or your head.  We don’t want to spend hours on the phone trying to get those things (this is time we would rather spend playing with you).  We don’t want to make our own bootleg recordings of your echocardiograms or your MRIs, just so another doctor can see them (we would rather make videos of you dancing).  We don’t want to figure out how to get that information SENT to other doctors or therapists trying to make you feel better (we would like someone, anyone, with a title other than mom or dad to do this).  We don’t want you to wait – not weeks, days, hours, even minutes, for the care you need.  We will not stop until these things are fixed (someday mommy will make you a board game with the funny game pieces like DICOM, Direct, HL7, EHR, BlueButton, MU and HIPAA – and all the pieces will work together).  We do not need to invent anything new.  The smart people have already invented the stuff that makes this all possible.  Now, it’s due time everyone charged with giving you the health and life you deserve stop talking about it and start doing it.

Mommy

Today is not normal.

Today is not normal.

February 7, 2013

Today should have been a celebration of my husband’s birthday.

Today should have been a day to rally around Congenital Heart Awareness Week.

Today should have been the start of our wedding reunion weekend in California.

Today should have been a day to finish up some work, get the kids to school, face the Minnesota winter.

But that’s not today.

Today our 4-year-old daughter Eve, is having neurosurgery – 1500 miles from home – to remove a brain tumor.  Nothing about today is normal.

I do not want to know what a cranial resection entails, no more than I wanted to know what a heart ablation or mitral valve prolapse entailed 4 years ago.

I do not want to understand that my little girl will be awakened mid-surgery, while her skull is still open, to make sure her limbs can move.

I do not want to know her fear and confusion.  I do not want her to be in pain.

I do not want to know that this sweet child, who has not been on this planet even 50 months, has had two heart surgeries and a brain surgery.

I do not want to know.  But I must know.

That is our job, as her parents and protectors.  To be smart and strong.  To understand what we can, and question what we don’t.  No stone can be left unturned.

I have no idea how such misfortune could befall one small girl.  But I do know her scars – on her chest, and now on her sweet head – will not define her.  They are part of her journey now – but her life will have meaning and beauty and power not because of the scars, but in spite of them.  Yes, I hope that somehow these new challenges will make a difference in other lives, as I know her heart has.  That is the only way to see around the randomness of it all.

Until today, we were 1in100.  Now we are also 1in1000.  Childhood brain tumors affect 4,200 kids in the U.S. each year.  Almost the same number of infants – less than one year old – die each year in the U.S. from congenital heart disease.  Comparing statistics is one thing. Comparing merit is quite another.

So, in honor of Eve, this is my small contribution to CHD Awareness Week: to NEVER again compare funding dollars or research numbers between horrific pediatric diseases.  I don’t care how common or downright rare the disease is.  If it’s your child, there is but one answer: make it go away.

Just because pediatric heart disease is more prevalent than pediatric cancer does not make it more important. Comparing research methodologies or means for two wildly different diseases is like comparing a paddleboat to a jetski.

Awareness is nothing without data. Data is nothing without people. People are nothing without collaboration. Collaboration is what makes the information meaningful enough to do something with it. I don’t care if you are a parent, a physician, a researcher or a technician – no one wants to feel like they are bringing a toothpick to a gunfight. Listen to each other. Learn from each other. Share information that can improve chances.

No one wants children to have their chests or skulls cut open to survive.  Even the doctors that do it don’t want to do it. They just have to do it.

Until we can prevent these things from happening in the first place, today we have early detection, access to effective treatment, meaningful data, constantly improving technologies and collaboration.

Today is not normal. Today my daughter becomes both a heart survivor and a brain tumor survivor. And she is amazing.

 

 

Eve’s Journey + A Heart Ball

Eve’s Journey + A Heart Ball

On the eve of Eve’s 4th birthday, honored to be sharing comments from the American Heart Association’s Heart & Stroke Gala on December 8, 2012….with profound thanks to the AHA for their commitment to early detection, research and advocacy for the youngest congenital heart patients.  Newborn CCHD screening is the organization’s top policy priority for 2013.  These remarks followed a video presentation of Eve\’s journey produced by the AHA. The event raised more than $900,000.

I want to thank everyone here tonight for your enthusiasm and generosity…and special thanks to AHA, and the rest of our family for being there through the journey.

4 years ago this week, our lives changed forever.  Eve was our Christmas gift – perfect on the outside, but broken inside.

There are people in this room tonight that we are forever indebted to – Dr. Lazaros Kochilas, whose compassion and craft kept Eve’s heart functioning long enough to get her to life saving surgeries – done in collaboration with Dr. Pedro del Nido at Children’s Boston.  Even more impressive – the willingness of these clinicians to look at options that would help avoid delayed diagnosis of CHD in newborns…to provide greater options for treatments and intervention.  Dr Kochilas, Dr. Jamie Lohr, and several other physician leaders at U of M Amplatz, Regions, Children’s and Mayo Clinic have donated hundreds of hours to this endeavor…and every family having a baby should be grateful for their efforts.

As everyone has mentioned tonight, we’ve come so far. We know that if Eve had been born 15 years earlier – when Jack was born, she would not likely have survived.  In that short time we have made so many advancements – a testament to advances in diagnosing and treating congenital heart defects.

But even with the amazing tools that are out there, so often due to lack of funding or resources, those tools are still not available to the doctors and nurses who need them.

We will continue to work with the American Heart Association …. to invest in CHD research and programs….to advance statutes and legislative requirements for newborn heart screening here and in states across the country.  Thankfully, our state continues to lead…just yesterday I was with the Commissioner of Health, who just a few weeks ago proudly authorized statutory language that adds Newborn Screening for CCHD to the state panel.  But we still need policy help to ensure there are resources available for hospitals to do this as a population health screening and collect important data on the results for each baby tested.

Pulse Oximetry evaluation is a key first step in helping us catch critical congenital heart disease early so it can be treated.

But there is still more to do and more funding needed to develop the science to nail down the causes of CHD, and provide treatment to these kids as they grow into adulthood, advancing the specialty of Adult Congenital Heart Cardiology.

My dad and my grandmother both had rhuematic fever as children….as a young woman about my age, my grandmother became Dr. Lillehei’s 3rd surgical patient on the heart lung machine in the 1950s – which gave her another 5 years of life.  My dad had his heart valve replacements at Mayo just 6 months after Eve’s OHS.  I only wish he and my mom were here tonight….

We’ve had the privilege of volunteering with AHA, long before our lives were so profoundly touched by heart disease. I was on the steering committee for this very event more than 13 years ago, when Jack was just Eve’s age.  That year, a teenager stood on this stage post-transplant, and talked to you about the importance of early detection and the advancements in treating CHD.  That boy, now an adult with someone else’s generous heart beating in his chest was just elected to the Minnesota legislature and will be sworn in as a state rep in January.  Congratulations Nick Zerwas.  What a story.  I expect to see you often this session in the halls of the legislature – and fully expect your signature on any legislation on CHD coming your way.

Finally, please remembers, that in just the time we’ve been together tonight, more than 50 children have been born in the U.S. with a congenital heart defect (40,000 this year). 10 percent of these babies will not see their first birthday.  We need research and advocacy to keep improve those numbers…

Your support tonight makes an impact.  Thanks to Eve, our house is one where we don’t sweat the little things, and we try to keep our eye on the ball.  We’re skipping the Barbies and castles at our house this year….so please join us in giving generously tonight.  Profound thanks to each of you…   ~ Annamarie Saarinen

The good with the bad.

The good with the bad.

Studies and peer-reviewed journal pieces have become standard reading over my career.  After Eve’s CHD and the founding of 1in100, even more so.  While in most cases, these are the types of publications that warrant credibility by name alone, it’s important to note that not everything published is direct science, has perfect methodology, or frankly, is to be taken as gospel.

It’s always exciting to see another published article on newborn screening for Critical Congenital Heart Defects.  The more info out there among clinicians, the faster the adoption rate.  That’s because 99 percent of the published pieces on this topic (at least since 2010) have been in support of routine screening of newborns for heart defects.

Two more editorial and commentary pieces hit the circuit this week in The Lancet: Kemper Screening of newborn babies Lancet 2012

and

A new milestone in the history of CHD Lancet 2012

There are some very important points addressed in each, most of which I fully agree and support.  Some of the comments – not so much.  To suggest the importance of better prenatal detection is of critical CHD is one thing.  To add that the purpose of such is solely to give families the choice of termination is entirely another.  The example used is Hypoplastic Left Heart Syndrome, which most would argue is now being treated with a high rate of success.  (See Gil Wernovsky, MD commentary: The Paradigm Shift Toward Surgical Intervention for Neonates With Hypoplastic Left Heart Syndrome.  To be sure, there are thousands of children in this country, and around the world, now surviving and thriving with HLHS.  To disregard this important clinical progress is a discredit to those patients, to those individuals and institutions providing interventional care, and to future families faced with this diagnosis.

With many scientific paper and editorials, we have to take the good with the bad, hoping that in most cases, the good far outweighs the bad.  Onward and upward.

 

Amanda Rose Adams takes it to the hill. Literally. We all have a role to play in advocacy.  She can help educate us all on finding the gumption to do it.  http://www.savebabies.org/blog/2012/06/not-my-fight-now-my-fight/

Getting the story right.

Getting the story right.

There was a time – almost 3 years ago, when it would be a VERY big deal if the news media picked up on a story about how often newborns leave the hospital with undiagnosed heart defects.  Even more rare to actually mention newborn screening for heart defects (CCHD) using pulse oximetry.  Now, rarely a day goes by when it’s not in the news!  Just last week, there was a very nice piece in the News-Times (Danbury, CT) – Looking for a Baby\’s Heart Problems, about newborn heart screening. Fellow heart mom Marie Hatcher (Matthew\’s Hearts of Hope) has been an ardent advocate for screening in her state, almost single-handedly advancing legislation and working with hospitals and the department of health.  As much as we LOVE, love sharing these articles and news stories, it seems like there’s always some fact or detail that gets missed.  As a former journalist (waaay back), this is frustrating.  We know a news story only has precious seconds or a minute, and articles must be edited.  But there are a few details that we – as advocates – can’t afford to brush off.  Here’s one:

When a baby passes the screen, parents can be assured that their  baby “does not have a heart defect”.  This is very dangerous territory. Screening with pulse ox is hugely effective, but it does not catch all critical heart problems.  Research estimates it is effective in indicating about 75% of defects, those that typically show up with lower 02 readings.

This is where education is absolutely critical. In training for hospital staff. At the bedside with families. With policy makers. And with any journalist who is trying to do the service of sharing news about this important public health screening.

Here are the facts:

It is possible that the pulse ox reading is normal despite a serious CHD. Your baby should continue to have normal visits with the primary care doctor. Any unusual signs or symptoms in an infant should always be reported to a primary care doctor, including:

  • Shortness of breath – this might be due to a build-up of fluid in the lungs.
  • Difficulty feeding – this may occur because the baby is having trouble breathing.
  • Blue lips and skin – some heart defects can lead to mixing of blue (oxygen depleted) blood from the veins and the red (oxygen rich) blood from the lungs. This may produce a bluish colour of the lips and skin, called ‘cyanosis’.
  • Tires easily - sleeps more than is typical for a newborn or infant.

No current screening tool exists to detect congenital heart defects 100 percent of the time. Pulse oximetry screening should detect most heart defects (those associated with a low blood oxygen level). However, some heart detects may not be found on screening (those not associated with a low blood oxygen level). Parents are advised to review the signs and symptoms of heart defects in infants and children.

Alas, we don’t have editorial license with most of the reporters covering this new screening, but if you are in a position to be interviewed, or to provide a comment or correction, it helps everyone better understand newborn screening for CCHD.

Finding Christmas.

Finding Christmas.

Three years ago today we spent Christmas Day at the side of our daughter Eve’s isolette in the PICU at the University of Minnesota Amplatz Children’s Hospital.  She was 13 days old.  It was the first – and likely the only time I will see Santa cry.

People still comment on how horrible that must have been – spending Christmas in the hospital with a sick baby, away from our other children and family.  I don’t remember it that way.  I remember the exponential gratitude of being there, where Eve was being nurtured and cared for by experts. She was struggling, but she was alive.  That’s what mattered.  And it was in that spirit of hope that Christmas remains the most sacred of days for us.

Here’s my wish – today and every day:  that people recognize the blessing of having access to medical teams that can heal broken hearts.  This is reality. In 98 percent of the rest of world, we would have just been another set of grieving parents.  Eve would have never survived for 13 days.  She would have been gone.

To those sitting in those hospital rooms tonight, we wish you hope, grace and comfort.  May your babies come home soon and thrive.  To those who know others sitting in hospital rooms tonight, find it in your hearts and in your hectic schedules to GO THERE.  Be there for those enduring this journey.  We know it’s hard.  Sick babies and children are not the things Christmas dreams are made of.  In fact, it’s just downright wrong. Anytime. Anywhere.  But these families need you.  Show up.  Be present.  Give, if you can.

During that first month, 3 co-workers and less than half a dozen friends visited us there.  I understood why, but that didn’t make it any easier.  Much of the saving grace came from emails, facebook posts and blog entries.  In this community of congenital heart defects, virtual strangers become virtual lifetime friends.  We find out how many 1in100′s there are. Perhaps that is the gift of adversity.  And it is an amazing thing to behold.

A Fight for Newborn Hearts

A Fight for Newborn Hearts

During my most recent trip to Washington DC, I got an email from Dr. Darshak Sanghavi, the head of pediatric cardiology at UMass.  He was sending a link to an article in the New York Times titled A Mother\’s Fight for Newborn Hearts, which told the story of our baby Eve and her journey.  When I first met Dr. Sanghavi, it was probably 6 months or more after her heart surgeries in Boston.  But I KNEW of Dr. Sanghavi long before that.  Just as we arrived at Children’s Boston from Minnesota, I had come across another post of his in the New York Times Screening Babies for Broken Hearts.  At the time we were focused on our daughter’s survival and little else.  But as she recovered from her ordeal, our family embarked on a journey that we hoped would improve the chances for other heart families to experience better outcomes, faster healing, and fewer tragedies.  Dr. Sanghavi’s vocal support of pulse oximetry screening as a tool to aid in the early detection of critical heart defects was among the few I had seen from the medical community.  It came around the same time as the American Heart Association and the American Academy of Pediatrics recommended against routine screening for heart defects using pulse ox.  Yet, the hint of opportunity was there.  If Eve’s doctors thought it was a good tool, then how many others did as well?  The rest is history.  20 months, 2 pilots, 5 federal advisory committee meetings, and 77 congressional and federal agency briefings later – the U.S. Department of Health and Human Services adopted the recommendation to screen all newborns for Critical Congenital Heart Disease.   There are processes in life.  And there are promises in life.  This was a convergence of both.  Thank you, Dr. Sanghavi – and every medical professional like you who is willing to team up with an advocate to advance a solid idea.

Universal Newborn Screening for Heart Defects Recommended

Universal Newborn Screening for Heart Defects Recommended

SACHDNC Meeting 9/22
Public Comments
Chairman Howell, Committee Members,

Thank you for allowing this participation today.  As of yesterday afternoon, the comments I had prepared have greatly changed.  We are overwhelmed by the Secretary’s positive response to this committee’s vote from one year ago to recommend newborn screening for critical congenital heart disease.

In support of this important screening – over the past few months, the following occurred:

  • Meetings with nearly 80 ( 77 ) congressional offices
  • Information briefings provided to 12 additional offices within HRSA and HHS, including the Secretary’s office
  • Four formal congressional briefings by the Newborn Coalition
  • Drafted and delivered dozens of letters to stakeholders, provided fact sheets, cost analytics, and shared updates on the status of the recommendation and response to the CHD community, public health and         health IT committees and leadership
  • Working directly with New Jersey’s Dept of Health implementation workgroup
  • Established pilot projects that support MU stage 3 care coordination and electronic reporting of pulse oximetry results

In just the year since the committee voted to recommend newborns be screened for CCHD, more than 120 additional hospitals around the country have started screening newborns for heart defects as a standard of care.  Pennsylvania has introduced legislation and New Jersey’s Governor signed their bill.  As of Aug 31, 2011, every newborn in New Jersey is being screened, using the protocol developed by the HRSA implementation working group.  All this happened in New Jersey in less than 8 weeks time…an amazing accomplishment, and a model for other states.

The number of hospitals screening grows every week, including an annual population of 15,000 babies in Minnesota.  We have also translated all our our parent educational materials into 3 languages and have a working IT project with MN Dept of Health to support electronic results reporting – one we hope to open source for every state attempting to set up similar procedures for collecting and reporting pulse oximetry data.

I hope this effort has reinforced something important – that the work here reaches beyond metabolic screening.

Today, 11,000 babies will be born in the United States.  110 will be diagnosed with some type of congenital heart problem.  11 of them will die before their first birthday.  No question – through your important efforts, that number WILL CHANGE.   Fewer lives will be lost to this insidious disease.

My dad was diagnosed with stage 4 cancer last week.  Here’s what no daughter wants to hear: we would have had more options had we known sooner.  It’s also what no parent of a baby wants to hear.  Early diagnosis of hidden diseases and disorders MATTERS.  You help make that happen.

On behalf of my family, 1in100, the CHD community and the Newborn Coalition, many thanks to this committee for the work you do and continue to do.

And thank you Chairman Howell – you have done work that will be recognized by generations.  You leave some very large shoes to fill. Wishing you all the best.

Thank you again.

Annamarie Saarinen, 1in100 / Newborn Coalition

HHS Adopts Recommendation to Screen Newborns for Heart Defects

HHS Adopts Recommendation to Screen Newborns for Heart Defects

Word came late this afternoon that HHS Secretary Sebelius has adopted the recommendation to add Congenital Cyanotic Heart Disease to the Recommended Uniform Screening Panel.  You can see the formal newborn screening for CCHD recommendation here.

This has been a long time coming.  Many good people and organizations were working toward the early detection of heart defects for many years before Eve Isley was born…but her life, and her spirit helped inspire many to move this down the pipeline toward a federal recommendation to screen every newborn in this country for heart defects using pulse oximetry.  It’s a good day for babies and families.

Many thanks and  gratitude to the countless individuals and organizations who supported this – in the early days, and just recently.

Many thanks to Secretary Sebelius and her staff for taking the initiative to dig deeper and get the answers required to ultimately back a population health issue that will save and improve lives.

Many thanks to the federal advisory committee (SACHDNC) – and it’s diligent, poised and passionate leadership – that voted to recommend this screening one year ago (Dr. Howell, may your commitment to newborns and children will be emulated by many).

Many thanks to the CDC, HRSA, NIH, AAP, AHA, ACC, March of Dimes, and countless physicians, advocates and public health professionals who stepped up last winter to work on a strategic framework for implementing this screening.

And many thanks to this community.  Through 1in100, we have known the grace and strength of families willing to drop everything and help each other through the unthinkable.  Continued hope and healing to all those touched by this wicked disease.

This was a battle worth winning.  The war continues.  We are ready.  #1in100