PCHA and YOU! – Town Hall Meeting

Connect, Learn and Lead:

PCHA TOWN HALL MEETING
May 28, 2015
1pm ET

Click here to register

Town hall meeting

Join Executive Director, David Kasnic, and Director of Programs, Amy Basken, for our first, ever, PCHA Town Hall Meeting.  During this interactive webinar, you will be provided with a brief update on PCHA programs, and then have the opportunity to interact with PCHA Leadership through a question and answer session.

When you register, you will have the opportunity to submit a question for the Q&A session.  You may also email any questions to advocacy@conqueringchd.org – please include “Town Hall” in the subject line.

After registering, you will receive a confirmation email containing information about joining the webinar.

Join us, as we work together to “Conquer CHD!”

Click here to register

Pulse-ox Screening: New Key findings

The Pediatric Congenital Heart Association supports early detection of critical congenital heart disease, including CCHD screening through the use of pulse-oximetry.

The journal Pediatrics has published a new study estimating the number of infants with critical congenital heart defects (critical CHDs) potentially detected or missed through universal screening for critical CHDs using pulse oximetry. CDC researchers estimated that about 1,755 infants with critical CHDs would be diagnosed late (meaning on or after the third day after birth). Of these, about half (875 infants) with a critical CHD would be detected through newborn screening using pulse oximetry, but an equal number (880 infants) might still be missed each year in the United States.

These findings indicate that current CCHD screening efforts work, but are far from perfect and there is much work that remains to be done.  Many kids will still be missed.  We cannot rest comfortably with the passage of regulation, we must continue to push for improved screening efforts.  Parents and pediatricians cannot assume a child does not have a CCHD just because the screening was “normal.”

A summary of key findings can be found here or read the paper’s abstract here.

Pulse Ox - Image by Massimo

Image by Massimo – all rights reserved

Ultra-Marathon Runners: The Value of Continuing Support for CHD Families

The Pediatric Congenital Heart Association recognizes the need for open, honest communication to empower patients and parents of children with CHD.  As Margaret describes, support can come from many people: doctors, nurses, or those who have walked this journey ahead of us.  The need for support does not end when you leave the hospital. Contact your hospital for information about local peer support or visit mendedlittlehearts.org for a list of congenital heart support groups across the country.

old footwear

Early on in our journey with CHD, when we were still in the hospital with our newborn baby, I was starting to get impatient, worn down, and, like any new mom, longing for the day we could finally take our son home and introduce him to life beyond hospital walls. I hadn’t yet met any other heart parents in person, and I was feeling overwhelmed from the 29th or 30th night of sleeping in a hospital pull-out chair, pumping milk, and spending the day next to our son’s hospital crib feeling pretty helpless about my entire role as a new heart mom at the hospital bedside of a brand new baby. I was starting to express my frustration to any doctor or nurse who entered the room.

“This is a marathon, not a sprint,” one of the nurses told me gently but firmly. “You have to remember that with these hospital stays.” And I did remember those words for subsequent surgeries. Hospital stays really do feel like marathons. But the challenges of CHD don’t end with surgeries or hospital discharges, and neither does the need for a supportive CHD community.

Hiking

Photo by Mako10

Last weekend, I attended a daylong training program on how to provide peer-to-peer support to other heart families. Almost seven years into this journey, despite providing informal support to many fellow heart parents over the years, I feel a pressing need to actively, continually learn how I can be the best member of a supportive heart parent community I possibly can.

These thoughts had long been weighing on my mind:

How can I support parents just starting out on this journey? How can we provide better continuing support to heart families post-surgery? How can we provide a continual, supportive network to heart families across the entire lifespan of CHD?

I can still remember one of the very first local heart moms I met whose son’s CHD is almost identical to my child’s. The relief I felt when I found out her child was a few years older than mine and they were enjoying their lives and loving their family. The weight that was lifted off my shoulders when I learned the first several months had been a big challenge for them, too, and that I wasn’t alone in my feelings, and that I wasn’t “failing” by thinking this was hard. All these years later, she is still the person I would consider my “go-to heart mom” for all things related to this journey.

My son will be 7 this summer, and though that shouldn’t sound old, it’s been almost 3 years since we were inpatient and going through the Fontan surgery, the last of the 3-stage surgeries for HLHS and several other single ventricle heart defects. These days, when friends in the CHD community are facing the Fontan and they ask me things such as, “how many calories per day will my child be able to have on the low-calorie diet?” or “What’s the latest protocol for warfarin, post-Fontan?” I start to reflect on how I am no longer always up-to-date on the changing protocols and guidelines, which can vary across institutions and individual patients, let alone over time. How much more do I feel that way when new parents are facing the earlier Norwood and Glenn surgeries, and ask me if they’ll be able to breastfeed their baby, or how many visitors are allowed in the NICU at a time, or how many cubic centimeters of formula their baby should reasonably be taking per day.

I don’t feel like an “older” heart mom (despite my–ahem–growing age)–after all, to me, those are the women who have walked much further on this road than I have, the ones I myself look to for invaluable support, advice, and information. The ones who have truly pioneered a world where we still have no definitive outcomes, who have gone before and mapped at least a few roadmarkers in relatively uncharted terrain. I feel like a middle child in our larger CHD community. I find wisdom from parents further along on this journey absolute gold, yet at times feeling increasingly out of touch with the finer details of the very earliest years. Maybe my role from now on is only advocacy, and I should leave the support part behind, I started to think. But as much as I love the variety of ways to participate in CHD awareness, the thought of being no longer relevant as a support parent and stepping away from the social aspects of being a heart parent made me feel sad.

It turns out, however, that it’s not about knowing all the answers to all the latest questions, or being a walking database of information. Medical questions are often best referred to doctors and nurses anyway, and information can always be found out with a little help and digging. What parents most often want is to talk to someone who has been through a similar experience and is often on the other side of what they are currently going through.

Doctors, nurses, and other professionals are wonderful sources of information, and parental support is certainly not meant to replace that. Parental support is meant to provide a calm and listening ear that isn’t constrained by busy hospital schedules or interrupted by pagers or alarms. It provides hope, encouragement, and empathy. It doesn’t have to–and often shouldn’t–involve fixing problems, having all the answers, giving advice, or telling a parent how to feel or act. It provides reassurance in what for many parents will be the scariest hours of their lives. However, other parents have been through what most of the doctors, nurses, and other professionals haven’t–hearing your child has a heart defect, handing your child over for heart surgery, and dealing with new normal that is life with CHD: the what-ifs and unknowns, the fears, the everyday challenges and victories, and the uncertainties of life with a “heart kid.” At the end of the day, the doctors, nurses, and hospital staff are there to treat the patients–our children, not us–and rightly so. That is what they are there for, and no parent would expect or want anything less than our children’s health to be their number one priority. Parental support allows someone to take a few minutes or an hour to pay attention to the parent first and foremost, and give him or her an outlet for their feelings.

The value of peer and family support, however, has an additional reach. Recent research conducted by Mended Hearts found that adult cardiac patients who had received inpatient visits from Mended Hearts volunteers felt more optimistic and had lower rates of hospital readmission for chronic conditions such as heart failure. When asked how Mended Heart volunteer visits were helpful, the most cited area was “support from someone with a similar experience,” even more than receiving information about their condition or the volunteer organization itself. These findings were especially significant in patients who were dealing with a chronic cardiac condition that required lifestyle changes–a description that applies to many heart families managing their child’s heart condition.

But the benefits don’t have to stop once families leave the hospital. An article published in the February 2015 issue of Cancer (a journal of peer-reviewed scholarly articles) described the findings of a study of breast cancer survivors who were experiencing post-treatment stress. The study found that the women who attended the support group did not experience the negative “biomarker of psychosocial stress” (in this case, a shortening of telomeres in their chromosomes, which speeds the aging process of the human body) that the control group that received no support group time did. The women who attended the support group had very similar results as a second study group of distressed survivors who attended yoga and meditation classes!

Finally, then, there is the need to provide continuing support and the sense of a sustaining community to heart families beyond those early years. As our children grow older, they (and we as parents) often deal with a new set of issues that can leave us, and our children, feeling isolated if we don’t have a supportive community around us.

Some of these issues might include:

–screening for developmental delays and obtaining access to services such as speech and physical therapy

–feeding problems, oral aversion, weight gain, and diet challenges

–setting up IEPs and 504 plans as our children enter school

–staying on top of the latest research developments in the CHD world, and what those mean for our child’s medical care and long-term options

–secondary complications or other health problems facing the patient or other family members

–seeking therapy or coping strategies for PSTD, anxiety, and other psychological complications members of heart families are at risk for

–support for siblings, who often feel left out, anxiety regarding their brother or sister’s future, or who deal with grieving

–potentially dealing with heart (physical) and health limitations

–your child’s growing awareness of his or her heart defect and mortality, the need and responsibility of self-care, peer pressure, bullying, how your child can talk to friends and potential boyfriends/girlfriends about their heart defect

–survivor’s guilt (sometimes seen in older heart children who have lost friends)

–dealing with the possibility of rebellion and risky behavior in young adult and early adult years

–transition to adult CHD care and your child managing their own health

–body image, birth control, pregnancy and parenthood, and much more.

–livelihood and financial management as an adult CHD survivor.

Heart parents want comfort and reassurance–but they also want honest answers, and to be equipped for the unexpected. It isn’t ethical to make false promises to new heart families that “everything will be just fine” or “you have three surgeries, go home, and that’s it.” Indeed, I would argue such statements do a disservice to members of the CHD community who are facing uncertain times, and ultimately, can contribute to a culture of denial that many are trying to move away from. We can’t pretend that it’s easy for any parent to hand their child over for open-heart surgery. We can’t pretend that hospital stays aren’t challenging feats of physical and mental stamina. We can’t pretend things will always be free of complications and unforeseen outcomes. Support is, “It won’t always be easy. But no matter what, we are here for you. You are not alone.”

“This journey is a marathon, not a sprint.” Even now, all these years later, I remind myself of those words during the times I need patience, answers, or fixes. I would argue that the scope and span of the entire CHD journey feels more like an ultramarathon–and we runners are here to cheer each other on for the long haul.

Margaret King bio

Margaret King is a stay at home mom who loves spending time with her family, avidly reading, community gardening, traveling, and exploring the outdoors. She is currently working on a young adult fiction series and enjoys flash fiction and science fiction writing as well. Margaret has worked in the past teaching English abroad in Nepal and Mongolia, which she counts among the best experiences of her life, along with her heart family journey which she is so happy to share with our readers.

Charting our future together: NHLBI’s Strategic Visioning Process

An announcement from the National Heart, Lung, and Blood Institute (NHLBI).  Join the Pediatric Congenital Heart Association in advocating for CHD research by sharing what you believe are the challenges facing children and adults with congenital heart disease. We encourage you to take a moment and participate:

The National Heart, Lung, and Blood Institute (NHLBI) launched its Strategic Visioning Initiative earlier this spring. The success of this Initiative depends upon your participation.

Please participate by submitting Questions and Challenges between now and May 15, 2015, at http://nhlbistrategicvisioning.ideascale.com/.

Your input will help us identify the most promising opportunities in heart, lung, blood, and sleep research, as well as the challenges that pose significant barriers to the progress of this research. There is one month to go to submit ideas to help NHLBI identify its priorities for the next decade.

If you have further questions, please contact us at NHLBI_Vision@mail.nih.govWe look forward to partnering with you as we collaboratively chart the exciting future of heart, lung, blood, and sleep research.

Legislative Champions – April Update

The Pediatric Congenital Heart Association, along with all of our amazing advocates, has been working hard to build legislative champions in Congress – lawmakers who have expressed an interest in CHD and have taken initiative by publicly supporting our issues.

Legislative Champions

Be sure to check out our updated List of Congenital Heart Legislative Champions!

This list includes everyone who signed the Dear Colleague Letters and joined the Caucus.  If your member of Congress is not on this list, do not worry.  Sometimes it takes several requests for them to take make the commitment to publicly support congenital heart disease.

Contact Your Lawmakers

If they are on the list, say Thank You!

If they are not on the list, ask them to join the Congressional Congenital Heart Caucus by contacting Tom Power in Congressman Bilirakis’s office at thomas.power@mail.house.gov

The following resources can be found in the advocacy section of our website

To learn more about our advocacy program, or to become an advocate, join our 1Voice/40,000 Strong Campaign by completing the form on our website!

Action Alert

ACE Kids Act – Better care for complex kids

The Pediatric Congenital Heart Association has offered endorsement and support of the Advancing Care for Exceptional Kids Act (ACE Kids Act) of 2015 (S. 298/H.R. 546) in a letter sent this week to the bill’s sponsors, Senators Grassley and Bennet and Representatives Barton and Castor.  .

Congenital heart disease (CHD) is the most common birth defect with nearly 1 in 100 babies born with CHD. One quarter of the babies born with a heart defect will require an invasive and potentially life saving intervention within their first year of life. Even with successful intervention, it is not a cure. Children with CHD require ongoing, costly and specialized cardiac care. As a result, the medical costs of children with congenital heart disease are an estimated 10 to 20 times greater than that of their peers. Hospitalization costs of pediatric patients total more than $5.6 billion annually, which represents 15 percent of all hospitalization costs for patients 20 years of age or younger. This represents a significant public health burden, given that one in every three children with CHD are enrolled in Medicaid.

The ACE Kids Act will create better care coordination, improve the standards of care, and reduce medical costs for the 2 million children complex medical conditions, including those with congenital heart disease. This measure will help ensure that every child with a congenital heart defect will be able to see a pediatric cardiologist that is right for their condition – regardless of where the child lives – while creating national standards for data reporting that will help fill our knowledge gaps of the prevalence, impact and public health burden of CHD.

Click here to read the complete letter.

To learn more about our advocacy program visit the advocacy section of our website and join our 1Voice/40,000Strong Campaign, today!

Advocacy Success: Children’s Health Coverage Extension Passes

Thank you to those of you who shared our action alert, called or emailed your members.

Our friends at March Of Dimes said it best:

Victory — Congress Passes Two Year CHIP Extension!

 

 

 

Last night, the Senate voted 92-8 to extend funding for the Children’s Health Insurance Program (CHIP) through September 2017!  The bill is now in the President’s hands, who has pledged to sign it into law.
This victory for women, children and families wouldn’t be possible without the perseverance of our dedicated supporters like you.  With this law, quality, affordable health coverage will continue to be available to millions of children and pregnant women.  For more information, seehttp://www.marchofdimes.org/advocacy/childrens-health-insurance-program-(chip).aspx.
Thank you for all your work to tell Congress how important CHIP is to families across our country – it made a huge difference!

Unexpected Hero

Special thanks to Mark Gentle who agreed to share his son’s story with us. The following photo was also shared with permission.

Carter

He was scarred.  He was scared.  And now, he’s a superhero.

Carter recently underwent open heart surgery to repair a problem with his heart he has had since he was born. The surgery left a large scar down the front of Carter’s chest, along the center of his ribcage.   When the bandages were removed, Carter was devastated by the marks on his chest. So, dad posted a picture of his son, asking friends and family to show their love and support for Carter and his new look.

Carter was born with the most common birth defect.  1 in 100 babies are born with congenital heart disease (CHD).  One third of those born with CHD will require life-saving intervention or heart surgery at least once during childhood.  That’s thousands of children, each year.

Carter was concerned that he was going to look different.  What he didn’t know was that his difference was going to make such a positive impact.  In a few short days, Carter’s picture has received more than 1 Million likes and more than 75,000 shares.

Carter, you are not alone in this journey.  Thank you for sharing your struggles and making one of the largest impacts in CHD awareness history!

The Original Post Can Be Found Here. Please visit, like and share!

 

Support Children’s Health Care Coverage

The Pediatric Congenital Heart Association supports access to specialized care that is vitally necessary for children with CHD. PCHA strongly urges the Senate to support a four-year funding extension to the Children’s Health Insurance Program (CHIP), which provides quality health insurance for more than eight million children with families too high to qualify for Medicaid but too low to afford private insurance. This includes millions of children with CHD. The Senate is expected to vote on an amendment that would extend the program for four-years – instead of the just two years passed by the House last month. Tell your Senators to #InvestInKids and #ExtendCHIP for four years by sending them an email.

 

 

Can You Hear Me Now?

Guest Blogger Chris Perez knows first hand that even the littlest action can have a big impact. The Pediatric Congenital Heart Association offers many ways to get involved.  Click on any of the following for more information or to get involved: volunteering, contacting your lawmakers, sharing your story.  By working together, even the smallest of actions can help Conquer CHD.

 

Can You Hear Me Now?  Good.

Remember this guy?

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Yes, I’m bringing back the Verizon Wireless Guy, who used to walk around saying “Can you hear me now?  Good.”  It was all about the strength of Verizon’s network and the ability to be heard clearly wherever you are.

Stories about heart warriors are always struggling to be heard in a busy and noisy world.  Still, they need to be heard, and we want them to be heard.  As a heart parent, I’m sure you’re connected with lots of other heart parents and it seems like they’re doing some spectacular things like speaking at conferences or even traveling to lobby with government.  And you…you can barely get out of the house.  You just want to be heard.  Well fear not, heart parent: you can still be heard on a smaller – and still VERY important – scale.

It’s OK to Start Small

While your first inclination is to go BIG – this is about your child, after all – lots of big things start small.  Doesn’t a fire start with a tiny spark?  So maybe you can’t make a trip to Washington DC or to your state’s Capital to do some lobbying.  All is not lost: you can still do it at home.  Start with your Mayor or City Council.  Schedule some time to tell your story and see if your local government can help pass that story along.  You’ll find that they love to hear from their constituents and possibly even have much more time to listen to you than someone in a larger level of government.  I remember reaching out to the Mayor of Charlotte regarding a proclamation for CHD Awareness Week and in a week or so I actually received one in the mail, which was really awesome!

Local news is a great way to share your story too: tv news, the newspaper, and even those smaller, local papers are great.  People complain that the news is full of bad stories, but I promise you they love good news just as much as you do.  There’s a weekly paper in my area that has done a really awesome job of sharing my son’s journey and people do, in fact, read that stuff!

If you’re shy and those things aren’t for you, then maybe you should consider starting a blog of your own.  I can attest to the power of the written word only through a blog: it’s given me an opportunity to connect with people throughout the world.  And all you have to do is type!  Likewise I encourage you to share your story with the Pediatric Congenital Heart Association: just go to http://conqueringchd.org/ and click on “Share Your Story,” and off you go.  You never know how your words can uplift someone who needs it.

Get Involved

Weaving yourself into the lives of others is a great way to share your story in a meaningful way.  Of course, I definitely encourage you to stay involved with the efforts of the PCHA: educate yourself, share with others, and advocate for more CHD research.  Take some time to look into local groups as well: maybe it’s a patient/family advisory committee through the Children’s Hospital, a support group, or a local chapter of a group like Mended Little Hearts.  These are opportunities to support and be supported and I can’t stress enough the importance of this.  My local group is called Camp Luck and they do amazing work that involves supporting families and running a medically-supervised camp for heart kids.  They hold lots of events throughout the year where my kiddos can come and play and you know you’re in the room with family: everyone understands you.  We’ve had the chance to meet some really cool people and when we get to share in our experiences, we find we get stronger.

Maybe – just maybe – you have some extra time on your hands.  What to do with it?  Volunteer!  There are a lot of heart parents who volunteer at their local hospital and it’s a wonderful way to give back.  There is tremendous value in being a volunteer, both personally and to the organization you’re supporting.  People also listen to volunteers: if you’re passionately involved at the Children’s Hospital, for example, it can open doors to sharing your story and helping people out because that passion will show!

Make Sure Your Opinion Matters

Ok Heart Parents…let’s be honest with one another here.  After a hospital stay, you get home and work on getting back to normal.  In the mail comes…dun dun dunnnn…a survey.  You throw it away, don’t you?  Come on, admit it!

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Well I have some news for you…these surveys are important…REALLY important!

You see one of the big changes in healthcare today involves the patient experience.  There’s the realization that people come into the hospital automatically expecting excellent medical care.  Duh.  I mean you don’t go in and say things like “I hope they operate on the correct knee today!”  Good quality care is a given, and it’s something that healthcare has been touting for years.  While that’s still important, healthcare is realizing that patients and their families have to actually be treated like human beings.  Have you had a rotten experience in the hospital?  Tell someone.  Feel like you don’t matter as a parent?  TELL SOMEONE!  Hospitals now have staff who handle these things day in and day out…and it’s not a mindless complaint process: they dig into data and look into root causes of problems in healthcare…and ultimately they work to fix that culture so the complete and total experience in the hospital is the best it can be.

So where do you think the hospital staffers get their data?  You guessed it: SURVEYS!  That’s why they’re so important: if your hospital is awesome, tell them they’re awesome…it really goes a long way.  If it wasn’t the best experience, say so in your survey, because nowadays a lot of federal reimbursement for hospitals is tied to patient experience scores and goals.  So it’s in their best interest to give you the best experience possible.  Now that doesn’t mean you should demand ridiculous things from your medical team, but rather they should be treating you with human connection, empathy and compassion.  They should communicate, they should treat you as if you were their loved one, they should include you in the whole process.  If they don’t, speak up!

Help out your local Children’s Hospital by filling out your surveys and providing good, honest feedback…it’s how your story can help them improve!

It Only Takes a Spark

What does it take to have an impact with your story?  Not a whole lot.  You don’t have to go big or go home: you can start small and let the fire build.  I really want to encourage you to reach out to local media or local government, get involved in your community, and make your voice heard through surveys!

 

BlogHeadshotChris Perez (aka HLHS Dad) lives just outside Charlotte, NC with his wife and 3 sons – including Nolan, who was born with HLHS in 2012.  He is the author of Half Heart. Whole Life: an HLHS Dad’s Blog, where he shares his journey as a heart dad with honesty, humor, and the realization that dad’s just handle things differently. In his spare time – if such a thing exists – Chris enjoys New York Yankees baseball, playing guitar, and memes.  You can visit Chris’ blog at http://hlhsdad.com.