Tag Archives: 1in100
It’s Father’s Day. Where’s the Baby Book?

It’s Father’s Day. Where’s the Baby Book?

I remember our daughter Eve’s first haircut.  It happened on Saturday night, at 2 AM.  She was 9 days old.

Paul and I were in the usual half-sleep that comes with having a child in an ICU.  We were down the hall from the PICU at the University of Minnesota Children’s hospital, and had just heard the dreaded “code blue” come over the intercom system.  This time was different.  About 2 minutes later, my cell phone rang.  It was the ICU attending physician asking us to come down.  I flew out of our makeshift floor-bed and RAN like hell the 50 or so yards to where Eve was.  “Is it Eve??”  No, calm down, they said.  Apparently all her tiny veins were blown out from days of fluids and meds being pumped into the body of 5.5 pound newborn…the only place left to place the IV was in her head.  They needed to shave some of her beautiful dark hair

Eve Saarinen, with Elle and Jack, 10 days old, U of M Children's PICU

- and didn’t want us to freak out when we came in the morning.  They saved her locks of hair for us.  We still have them to this day.

What we don’t have is the proverbial Baby Book to put them in.  There’s nothing on paper historically documenting Eve’s first coo.  Her first smile. Her first babble, first tooth or first roll-over.  This, I suspect, is a sad reality for too many of the families whose babies face critical illnesses. There are simply more important things to focus on when your kid is fighting to survive. I just told my mom this morning that I cannot recall being at Eve’s baptism. I know we had one…it was at our church even.  But it wasn’t long before we were prepping to go to Boston Children’s Hospital for her heart surgeries and our brains must have been mush. Gratefully we live in the era of cell phone cameras, or we probably wouldn’t have any photos of Eve. Frankly, it’s a little tough to be in “photo shoot” mode while your baby is hooked up to a dozen lines and monitors.  While these images may be hard for others to look at, we treasure those grainy pictures.  She was so serene and lovely – yet tough as nails.

Eve Saarinen, April 2009

We also live in the era of Facebook, Twitter and blogs. Eve is fortunate to have a daddy who qualifies as an “early adopter” of these methods of communication and historical documentation. Random fact: Eve’s older sister Elle’s birth was hailed by the Sydney Morning Herald as the first live-tweeted delivery).

Paul was a champion at keeping our close friends and family posted on what was happening with Eve in the hospital.  It’s hard to express how grateful I am for this.  He took photos, he blogged. He DID the baby book.  Virtually.  We can still access most of it.  And may go through the process of pulling Facebook and blog posts into a more permanent format, so Eve can read her own story someday, as so many others have told it too.  Some of Paul\’s posts were so profound (still are, even this week)  that I still revisit them now and then for a moment of thankfulness and grounding.

Eve and Paul, Children's HeartLink gala, 2009

We think she’s a pretty cool kid – with a pretty cool story (minus the actual baby book).  For now, the locks of hair, the pulse ox wrap and her ankle bracelets can stay in a keepsake box.  Her life continues to be full of firsts.  The dates don’t really matter.  What matters is that she came to us, she powered through, and she is here to ask her daddy all about it.

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/

Collateral Damage

Collateral Damage

I had an opportunity to be in Boston a few days ago – and to visit Children’s Hospital Boston.  A fellow Minnesota family is there right now with their 8 month old baby girl, recovering (beautifully) from a heart surgery at the hands of Eve’s surgeon, Dr. del Nido (their cardiologist at the University of Minnesota Amplatz Children’s Hospital is also ours, Dr. Kochilas.)  Baby Maddy’s room was two doors down from our old room – 8E, right across from the nurses station.  It all came flooding back.

It was 3 years ago this week that my husband and I flew our 3.5 month old baby from Minnesota to Boston to fix her heart.  She had just a couple weeks left to live.  I don’t remember being anxious or afraid. I remember being confident.  We were doing the right thing. She was going to come home with us and grow up to be a happy, healthy girl.  Somehow I knew this to be true.

I’ve told people many times since, that it was our mission at that time to never bring fear or pain into Eve’s ecosystem.  No matter how tired, discouraged or nervous we were along her difficult newborn journey – we were always positive and upbeat around her hospital bed.  Always.

There was always a scarf in her little isolette that smelled like mommy or daddy.  We must have recited Brown Bear, Brown Bear a thousand times.  We played the Disney Lullabies CD over and over.  And that musical seahorse.  I still wake up hearing that sometimes…

Even during pokes and painful procedures, we would just tell her how we were sorry, but that she was so very brave and strong. She needed us.  That is certain.

Sometime when we took a walk outside her room, it was all we could do to stand.  There’s no way to explain this type of sheer exhaustion unless you’ve been there.  We needed others – to lean on when we left her room.  Our hearts shine from the friendships we have gained because of Eve and her broken heart.  For every lost friend (unfortunately there were some), we have gained 10 new ones.

One of the great human tragedies of pediatric disease is the loss of friends, family, support systems. Again, no one can understand unless they have been through it. Nearly every day, I hear a heartbreaking story of how a best friend never came to visit the hospital.  How parents, brothers, sisters…and yes, even spouses, just bail. Sick infants are not the things of story books and fairy tales.  Tubes, wires, monitors, cuts, stitches, blood.  Congenital heart disease is an abomination.  No child should have it.  Period.

But until the day when children suffer disease no more, reach into your soul to BE THERE for those you know going through a traumatic health experience with their child.  BE THERE for those you barely know.  And BE THERE for those you don’t know. Suck. It. Up.

Eve is 3 now. She is the happy little girl I promised her she would become.  And someday soon, I hope we can share her amazing story with her – and teach her one of the most valuable word in the human vocabulary: compassion.

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.

The Birth Announcement (That We Didn’t Want to Send)

The Birth Announcement (That We Didn’t Want to Send)

Eve Isley Saarinen was born the evening of Friday, December 12th  – 6 lbs, 9 oz, 20 inches… lots of beautiful dark hair.

At 2 days old, Eve was diagnosed with congenital heart disease. It’s a broad category.  Her biggest problem is a severely leaky mitral valve, which puts strain on the whole heart function, enlarging the heart and putting pressure and excess fluid on the respiratory system.  She was transported by Lifelink to the University of Minnesota NICU on the 14th.  Paul drove through the blizzard that night to be at her side, but since I had a c-section I could not be discharged until the next day.  Took a cab over there on the 15th and we hunkered down for the next 5 days.  The medications seemed to be working at first, but within a couple days her heart was continuing to get larger, her breathing more labored.  After an episode of SVT – which is basically super-fast heart arrhythmia, she was immediately transported to the U of M Children’s Hospital pediatric intensive care unit – closer to the full time cardiology staff and cardiac surgeon.

She was started on a new, stronger drug to alleviate some of the pressure and workload on her heart.  We were warned that her situation was precarious.  The surgeon and team spoke to us of a possible transplant (her heart had already been greatly damaged by her defect and the tachycardia).  Yet with all this, she has started to turn a corner and improve.

It is slow progress – and it’s hard to be patient.   We don’t know how long we’ll be here as the medicines do their work…though they seem to be stabilizing her.  We’ve told our parents to come now…want them to know her if God takes her from us now.  Just writing this is almost unbearable.  For now, we are only positive around her…so we cling to a tentative plan to get her bigger and stronger for a heart surgery at about 3 months old.

There are very sick children all around us here.  It’s the holiday season and there shouldn’t be any sick children.  Anywhere.  So we pray for all these babies and continue to be grateful for how well Eve has been doing.

Blessings to all of you in the new year – cherish your new arrivals.  They are the greatest gifts.  We’ll do our best to keep you posted (Paul’s Eve blog updates can be found at:  www.tweetandmeet.com)

Annamarie, Paul, Jack, Elle and baby Eve

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

Up Next: Newborn Screening for Heart Defects

Up Next: Newborn Screening for Heart Defects

The Department of Health and Human Services just held a stakeholder call to update on the status of the recommendation to screening newborns for CCHD with pulse oximetry. Given the 5 recommendations related to this screening, the Secretary has found several items she would like to have further clarification on to move forward with the screening (see the original recommendation letter here). 

It was clearly stated that the Secretary recognizes the critical importance of CCHD, and has requested further efforts be undertaken immediately to work through the issues surrounding the pulse ox technology itself, follow up diagnostics, service infrastructure, and education. The Newborn Screening Saves Lives Act (of 2007) required the formation of a supplemental Interagency Coordinating Committee on Newborn and Child Screening issues. This committee includes directors of the CDD, HRSA, NIH and AHRQ. The committee has been IMMEDIATELY tasked with reviewing the original SACHDNC five recommendations, any gap areas, and the document produced from the Implementation Workgroup – their goal is to close the gaps. It is the committee’s first order of business…and they have 90 DAYS to provide a plan of action.

Here’s what I know. Without the outreach all of you did, sharing your support and personal stories, this important secondary advisory committee step wouldn’t be happening. This was going down the road of being an averted recommendation. Now it’s not.

So while we might not have the green light quite yet, the motor is running and the car is in gear. Please accept my profound gratitude for all you continue to do to support early diagnosis of heart defects.

I can be honest here, with all of you. These last 10 days have been hard. a hundred hours of time, anxiety, nausea, all of it. My first reaction to the 90 day delay was this: in 90 days, 1,000 more babies will die – and realistically, 200-300 of them will be contributed to by late diagnosis.

But I also realize there is solid intent on the part of the federal stakeholders to get this right. In that spirit,  let’s support this effort, continue the work already being done, and look forward to widespread implementation of newborn screening for CCHD.   #1in100