Supporting Development in Children with CHD

The Pediatric Congenital Heart Association recognizes that with increasing knowledge of issues relating to long term outcomes for children with congenital heart disease, as a parent, it can be difficult to understand what it might mean for your child.

Photo Courtesy of T. Rainey

Photo Courtesy of T. Rainey

In 2014, the American Heart Association published an article by leading neurodevelopmental and pscyho-social experts, including PCHA Medical Advisory Board Member, Erica Sood, PhD. This article provides helpful information about what to expect and potential concerns for children with CHD through the transition into adulthood.  This is not a substitue for medical advice, rather a resource to begin a conversation with your doctor.

The complete article can be found in the educational resources section of our website.

Here is an image of the included diagram:

Supporting-Development-in-Children-with-CHD.pdf

Brosig, et. al Circulation. 2014; 130: e175-e176

Media Advocacy

“Advocacy groups have carved a niche for themselves in the broadcast industry’s policy-making apparatus by first defining key public interest issues and then by advocating ways by which broadcasters may address these issues.” – Museum of Broadcast Communications 

PCHA has seen the tremendous benefits of social media advocacy. In the first half of May two of our key volunteers and dedicated advocates shared their story with a local television station and created a buzz locally and nationally, reaching tens of thousands of people with the simple message that we must do more to conquer CHD.

You, too can share your story with the media, from the comfort of your own home!


Interview

Preparing your story

The first step in any type of advocacy is to prepare your story.  This is especially important in media advocacy because you are often recorded.  But you can do it!!  Check out our Telling Your Story resource to help you develop your story.  We are more than happy to review your story or help you practice.

The next step is to identify a few key talking points.  If you haven’t already, sign-up to receive our advocacy emails that can serve as guide to what we are currently working on in Congress.  You can also contact our office for an updated list of points tailored specifically to you.

Make sure you have an ASK!!  What is it you want the listener to do?  For example: Visit a website to learn more, attend an event, become an advocate, or donate.

Lastly, it is helpful to provide any internet links and statistics in written format to make sure they are correctly delivered through the media.  The PCHA Fact Page is regularly used for this purpose.

Connecting with your local media:


Television and Radio
Most television and radio stations have an email address to submit interesting stories.  You can submit your written story through this mechanism.  It is best to confirm that it was received with a follow-up phone call.  When you call, it can be helpful to ask to be directed to the health or human interest correspondent, as this person would be most likely to pick-up your story. Tying your submission with an upcoming event, activity or project will help, too.

Newspaper
A letter to the Editor or Op-Ed piece are great ways to initiate contact with your local newspaper and can lead to a lengthier story.  A letter to the editor can be created directly addressed to a lawmaker and have a call to action.  An opinion or editorial piece is shares information about CHD and can highlight any work a lawmaker has already done.  It helps to write this in conjunction with a medical professional who can provide technical expertise.

Social Media
You can also connect with media personalities or stations through Facebook and Twitter.  You can share your story on their page, or tweet a link to a resource like our fact sheet.

Tell us about it:
Be sure to let us know you participated in Media Advocacy.  We can follow-up with the media folks if needed.  We can also promote any features that result through social media and share with your lawmakers!

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.