Survey: Parents and Public Reporting

SurveyYour experience matters and your input is very valuable!

Read on for important information.  You can access the survey here.

Over the last two years, the Pediatric Congenital Heart Association has been working hard to achieve public reporting and transparency of congenital heart disease outcomes data.  Some of our activities have included our Questions to Ask Your Provider, presentations at national conferences, and our Transparency Summit Series.  Each step of the way, we have relied on parents like you to help guide us.

To learn more about the parent perspective on public reporting, the Children’s Hospital of Philadelphia (CHOP), in conjunction with the Pediatric Congenital Heart Association, Mended Little Hearts, and Sisters by Heart, has developed a survey for parents of children with congenital heart disease.

This survey will help us better understand what information is important for parents making decisions about medical care for their children.  It will also help answer questions about the ideal format for presenting this information, essential facts that should be displayed, and potential barriers parents may face when trying to find this information,

In this survey, we are asking parents of children with congenital heart defects, including parents of children who died from their disease, about the information you want to have when deciding which hospital and physician you choose for your child’s care.  By surveying a broad number of parents, like you, we can better inform our future efforts at public reporting as we work with physicians, hospitals and policy makers to improve access to this important information.

The survey is web-based and completely anonymous.  We estimate that you will need about 20 to 30 minutes to complete all the questions. You do need to be 18 years of age or older to participate.

Let us emphasize that you are free to either participate in this survey or to decide to not participate.  No one will know whether you have decided to participate or not participate.  Participating in the survey, or not participating, will have no impact on the care that your child will receive.

You can access the survey at the following link: https://redcap.chop.edu/surveys/?s=NARY88E93E

Thank you very much for your help with this important project!

Should you have any questions or concerns about the survey or your participating, please do not hesitate to contact the survey team at Children’s Hospital of Philadelphia via email:

Mallory Irons (ironsm@email.chop.edu)

J. William Gaynor, MD (gaynor@email.chop.edu)

Chris Feudtner, MD PhD MPH (feudtner@email.chop.edu)

 

Living Dangerously: Cringe-worthy moments in the life and times of a heart mom

Margaret King is a talented writer who volunteers to cover a variety of topics for the Pediatric Congenital Heart Association. We are so thankful for her, as we are of all our volunteers. Lend your own talent to make a difference, volunteer with us today!

Being a heart parent requires leaps of faith every day. All parents walk the balance between protecting their children and allowing them to experience the outer world. Some days pass relatively smoothly, whereas others require a great deal of restraint. On those tougher days, I often find myself inwardly cringing, while outwardly keeping a smile on my face because my son is having such a great time being a “normal kid.” Here are unadulterated snapshots of some of my most mortifying heart mom moments in all their cringe-worthy humor — and thank you to my family for agreeing to let me share them!

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Did a little spit, dirt, and hair ever hurt anyone?

All children go through a phase of picking things up off the ground and putting them in their mouths. As heart parents, the importance of keeping our children as healthy as possible is drilled into us. A simple virus can set our heart kids back weeks, if not more, and other contagious illnesses can have serious health consequences for our children. Yet, we also know that our children need to explore their world, and build up their immune system like any other child. And so, I resolved not to freak out when Kieran put his mouth on the handlebar of a shopping cart, or chewed on the edge of a grocery store counter during checkout. But the biggest cringe-worthy moment I experienced in this department was when my son picked up someone’s discarded, half-eaten lollipop from the sidewalk, decided it was a serendipitous find, and before I could react, stuck it in his own mouth. Luckily, his own horror matched mine when he found the texture gritty, and pulling it out of his mouth to inspect it, found it was covered in dirt and strands of hair. “We could bring it home and wash it off,” he suggested hopefully, before I convinced him to chuck it as far away from human civilization as possible.

Clean Freak/Obsessive Mom

Do a lot of heart parents appear obsessive much to their social circle? No, not us (cue the sarcastic font)! When Kieran started kindergarten, I grilled his teacher about the availability of hand sanitizer, hand wipes, and disinfecting wipes in the classroom.

“Do you need me to come in and wipe down tables and toys?” I inquired hopefully. I was told that really wasn’t necessary, as the school custodian took care of cleaning the classroom, but that they would be more than happy to let me provide hand and disinfecting wipes.

I ran to the local big box store within ten minutes and filled my cart with industrial-sized tubs of cleaning wipes, and dropped them off that day with a note to let me know when they needed more. They must have lasted a long time, because I never got a request for more. Then again…maybe I scared them a bit with my apparent germophobia?

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85-year old kindergartner

My son has a cyanotic heart defect, which means his blood is deprived of full amounts of oxygen. One result of cyanosis is getting cold easily, and for most of the year (especially in spring, when others are perhaps overeager to cast off heavier clothes), my son dresses as if it’s 10-20 degrees colder than it really is. In March and April, he will be bundled up and beg to wear long underwear, a winter coat, and woolen hat when other kids his age are trying to get away with shorts or sandals. On a couple occasions, other moms have even peered at us and pointed out, as I’m wrapping layer after layer onto my son, “it’s really not that cold out.” Yes, well, tell that to my son while he’s screeching over a waft of fresh air from a cracked-open window–and tell that to my dear 85-year old Grandmother, while you’re at it!

Anti-Social Events

Social events have often required some degree of internal negotiation and planning for us. Whether its considering the weather (how hot it is outside, the risk of contagious illness during cold and flu season), parking issues (how far our son would have to walk for an event – festivals and professional sporting events are especially problematic), social concerns (how understanding friends and family are of my child’s limitations), or a myriad of other factors that run like a litany through our minds, sometimes I worry we come off as anti-social.

When my son was on Coumadin, we had the added concern of keeping our extremely active but uncoordinated toddler from major falls and head bumps. I recall the summer of his Fontan operation, the third of the 3-stage open-heart surgeries for his heart defect, when we were still supposed to keep him from doing heavy physical activities. His sternum was still healing, and the Coumadin left him prone to serious bruising. We were invited to a nearby church picnic, and as this church had been very supportive during our hospital stay, we wanted to go to say thank you to as many people as we possibly could. We also thought it would be a nice, family-friendly, safe atmosphere for Kieran to have some summer fun.

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When we got there, however, I knew we were in for big trouble. There was a large bounce house at the picnic, swarming with kids who were at least three times Kieran’s size. The larger kids were monopolizing the bounce house, and I watched with sinking dread as first one, then another small child emerged sobbing from the bounce house. Kieran saw the bounce house, and was overjoyed. The poor kid, cooped up in a hospital bed and then at home for much of the summer, must have thought he had hit the jackpot!

“Oh, no,” I said. “No way. NO. WAY!”

Cue total meltdown at the church family picnic, and the resultant heads turning with their eyes upon me and my husband, who were trying to calm and reason with our post-surgical young son.

We let him go in for “two minutes,” but unsurprisingly, he wouldn’t come out after a couple minutes of rough, wild body-slamming. I watched as he bellyflopped for the second time on his newly-stitched sternum, and imagined what cardiology might be saying to me right now. I watched further as 12 year-old kids shot through the air like ballistic missiles, narrowly missing my son.

“Get him!!! Go in there!!!” I hissed at my husband, who bravely entered the fray and dragged our son out.

Cue second meltdown.

In the end, we left after 20 minutes with a screaming child, hanging our heads as if we were the meanest parents in the world.

Epic Fail

However, the cringe-worthy moment that stands out the most involves our pre-op instructions before the Fontan, our son’s third open-heart surgery. Kieran’s Fontan was scheduled for a Monday, which meant that our pre-op day was the Friday beforehand. After a long day of appointments, meetings, and blood draws, our son was given “blood bands,” which were hospital ID bracelets that prepared him for surgical intake and patient identification. We were given strict instructions not to lose the blood bands or let them come off at any time during the weekend. Of all the instructions we were given that day, other than the NPO guidelines (ie, no food by mouth), the blood band instructions were the most important. “If you lose them, we’ll have to reschedule the surgery and do the lab work all over again,” we were told. No one wanted that, especially Kieran, who can name about 1,000 things he’d rather do than get blood draws.

However, we quickly learned that it wasn’t so easy to keep loose-fitting, plastic ID bracelets on a 3-year old boy. Not only did they keep slipping off, but the fact that it was finally summer in WI, and the fact that we weren’t certain how much of the summer our son would be able to enjoy, made us give in to his request to play with his water table at his grandparents’ house over the weekend. Surely there could be no harm in that, right?

My well-meaning parents sprayed sunscreen on my son, and he happily went over to the water table and splashed around. It wasn’t until later that we realized the combination of spray-on sunscreen and water had made all the writing on the blood band bracelets slide right off. Instead of identification bands, our son now had two completely white plastic bracelets that barely stayed on his arms.

We crossed our fingers and hoped for the best. On Monday morning, we sheepishly reported to surgery, hoping no one would notice, but right before the first oral sedative was administered, the nurse peered at the blood bands in consternation. We knew the gig was up, and confessed everything.

“Oh, no,” she muttered. “Oh, dear.”

One of the blood bands was completely illegible, and the other had only the faintest outlines of the print that once was. As she squinted, we waited nervously, afraid that after all this, the surgery would have to be rescheduled and the painful, traumatic blood draws redone. Finally, the nurse said she was able to make out some of the original print on the bracelet, and Kieran had his Fontan surgery as planned.

And this still remains … my biggest cringe-worthy heart parent moment yet.


Margaret King bioMargaret 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.

Volunteer at PCHA!

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The Pediatric Congenital Heart Association recognizes the vital importance of volunteers to ensure that we can achieve our mission – to Conquer Congenital Heart Disease.  It takes a community coming together around education, research and awareness to make an impact!

Ready to Volunteer?  Complete our volunteer application, today!

There are many ways to get involved:

Administrative Support – Help with data entry, writing letters, licking envelopes, all the little details that contribute to the big picture of empowering families and Conquering CHD!

Blogging – By making us laugh, cry and touching our hearts, our team of bloggers makes it personal with their words and pictures about experiences so many of us can relate to.

Communications and Marketing – Help us create and communicate the greatness that is PCHA! From graphic design to campaign execution help us tell the story of PCHA.

Donor Development – As a non-profit, PCHA relies heavily on the support of our individual donors.  Help us work with our donors to keep them informed, engaged and supportive of the work of PCHA!

Event Planning – “I wanted to plan a wedding, without the marriage part.” Attention to detail will ensure success for our events like our CHD Galas, dinner fundraisers and conferences.

Fundraising – Help us put the “fun” in Fundraising!  From Jamberry Nails to a birthday challenge help us raise much needed funds that support our vital programming including our Suggested Questions Tool for parents and Transparency Summit Series.

Grant Writing – This takes a special talent.  If you’ve got it, we need you!  Help us secure public and private dollars to support our key programs!

Industry and Corporate Development – Are you connected in the medical or business world? Please consider working with PCHA staff to grow relationships with industry and business partners to broaden our program support.

Legislative Advocacy – Whether it is calling, emailing, or visiting their lawmakers at home or in Washington D.C. the Pediatric Congenital Heart Association advocates are an amazing bunch!

Patient Education – Help us design tools and materials to empower patients and families that meet desired health literacy and diversity standards.

Social Media Ambassador – The impact of the passionate and engaged volunteers who like, share, re-tweet, post and tag has not gone unnoticed.  Our engagement ratio is higher than nearly all other CHD organizations out there!  Using social media to spread awareness and knowledge, indeed is a powerful form of volunteerism.

Volunteer Coordination – If you are a people person, than this is for you! Help us keep our many volunteers engaged and excited about PCHA and all that we do!

If you are interested in volunteering or would like more information, please complete the volunteer application, today!

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When a Cause Finds You

The Pediatric Congenital Heart Association is pleased to welcome Jonathan Corwin as our newest blogger.  In just a few short months, Jonathan has dove in and participated in many PCHA activities from advocacy, to fundraising, and now blogging.  Welcome, Jonathan, we are so grateful you found us! If you would like to be an advocate, like Jonathan, sign up to join our CHD advocacy network, today!

There are times when you find a cause and then, there are times when a cause finds you.

My son, Lukas, was welcomed into this world in June of 2011 looking as healthy as his brothers before him, even though we knew something deadly was lurking. Having already been diagnosed with Truncus Arteriosus, it was a moment that forever changed our family and brought about experiences I never could have imagined. Lukas is why I advocate on behalf of Congenital Heart Disease (CHD). After watching my own personal heroes in scrubs and lab coats fight to save his life, how can I not? Many CHD survivors cannot advocate for themselves. How can I not?

I chose to attend the 2016 Congenital Heart Legislative Conference in Washington, D.C. earlier this year with Lukas, and it was an extraordinary experience. I was inspired among so many survivors and their loved ones, a collection of people, many of them strangers to each other, all sharing a common bond and mission. The determination to fight for this worthy cause energized the room. The conference was an opportunity to share our stories and command action with Members of Congress elected to represent us. And that is exactly what we did. There were stories filled with joy and those filled with heartache, stories of second chances and those we have lost. Sharing Lukas’ story in the fight for CHD advocacy has been one of the most incredible and rewarding experiences of my life.

Lukas Corwin

After Lukas was born, I watched helplessly over the next two weeks as he went further down the path of heart failure, while his doctors gave the rest of his tiny body as much time as possible to grow stronger. He was immobilized and intubated. As if this was not already terrifying enough, he stopped breathing due to a nerve response triggered by the breathing tube. Alone in the room with him the first time this occurred, I panicked as his color drained, alarms began to sound, and medical personnel rushed in from every direction. They began their work and openly pleaded with him to take a breath. I can honestly say I have never been so terrified in all my life. This scene was repeated a half dozen times over the next few days leading up to his first open heart operation. He came through this ordeal with flying colors and we were soon able to join him in recovery. My little boy was less than a month old and already he was the strongest person I had ever met. He underwent a second repair in 2015 and continues to be a shining example of perseverance.

For the first time ever, Lukas met someone with the same heart defect at the conference. It was a very personal moment. My son beamed while showing this young lady his scar, and she asked if she could FaceTime with him and keep in touch. I was so touched. I was forced to hold back tears. At 17, she is wise beyond her years. It is people like those we met at the conference and on this journey who will bring about change in outcomes and patient care.

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Sharing stories likes Lukas’ not only brought us closer at the conference, but were a window for Members of Congress into the importance of fighting for this cause. 160 attendees participated in meetings with our legislators as we implored them to cosponsor the Congenital Heart Futures Reauthorization Act of 2015 and make appropriations requests relevant to CHD for the Centers for Disease Control and the National Institutes for Health. We made a lot of progress and laid the groundwork for even greater successes in the future.

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I did not find this cause, this cause found me. Now, I feel the responsibility on behalf of my children, and those other CHD survivors who need a voice, to use every tool at my disposal in this effort. Too often we have potential champions for this cause who have never been asked or given the opportunity to lend their voice. I am here to ask you to lend yours. Will you join the fight for CHD advocacy and help introduce others to this life changing journey? Congenital heart disease is the most prevalent birth defect leading to infant mortality in America. That simply is not acceptable. Not by any measure. Together, we will build a coalition of legislative champions who strive to give healthcare professionals and researchers every tool they need to save lives and improve patient care.


Blogger_Corwin_JonathanJonathan Corwin lives just outside Indianapolis, IN with his 3 sons – including Lukas, who was born with Truncus Arteriosus in 2011. In addition to his advocacy on behalf of congenital heart disease, Jonathan was previously an aide to United States Senator Richard G. Lugar. In his spare time, he enjoys taking daytrips with his children, Indianapolis Colts football and Indiana Pacers basketball.

Guided Questions Tool

Ask these important questions to your care team.

Click here for a printable .pdf version of the Guided Question Tool/Questions to Ask your Cardiac Care Team.

 

QUESTIONS TO ASK THE CARDIAC TEAM

It is hard to hear the words “there is something wrong with your baby’s heart.” But, there is hope! Thanks to new and better treatment, your baby’s chance of surviving is better, with the right care.

At the Pediatric Congenital Heart Association (PCHA), we believe that information is important when making decisions about the care of your child.

For this reason, the following questions were designed to help when you talk with the care team.  Some of this information may not be familiar or hard to understand.  We have included key ideas on the last page to help.  Your care team can help you understand, too.

Experts think there are certain care standards that a quality treatment center should meet.  Not all centers are the same. Some families may want to contact another center to better understand treatment options. Often, second opinions are reassuring; further building trust between you and the team you are working with.

At any time, if you feel you need help or extra support, please contact PCHA.  We do not have all the answers, but we can certainly help guide you.

For more information about congenital heart disease and links to additional resources, please visit our website at conqueringchd.org.

Information About Your Cardiac Center:

  1. How many procedures do you perform each year? How many times have you and your program performed this procedure or ones like it in the last year?  Over the last 4 years?
  1. What is the survival rate for this type of procedure at the time of hospital discharge? After one year? How do your results compare to other centers’ results?
  1. What are the most likely complications or things that can go wrong, with this procedure and how often do they happen within one year of this procedure?
  1. Do you share your results with national data programs such as the STS Database or Impact Registry to help improve care? Is this information open to the public?
  1. Do your surgeons have special training in congenital heart surgery? What other types of special training do your doctors and nurses have?
  1. How are family members included in the decision making process? How will the care team give me information, or reports, before, during, and after the procedure?

Information About Your Hospital Stay:

  1. How many days do you think my child will be in the hospital, both before and after the procedure?
  1. What are my options for when, where and how to deliver my baby? How do you work together with my OB/GYN/Midwife to prepare for my delivery and my care right before and after delivery?
  1. How do you work together with my baby’s doctor after birth and after the procedure?
  1. If my baby needs to stay in the hospital after delivery to prepare for a procedure, where will he/she be? What about after the procedure? Do you have a cardiac intensive care unit (CICU) that cares mainly for children with heart defects?
  1. Will I get to hold my baby before or after the procedure? If so, when and how?
  1. Will I be able to breastfeed my baby after delivery and again after the operation? Will my baby require a special diet? Should I expect my baby to take a bottle or breast feeding without problems?
  1. What do you do to help prepare parents to take their babies home from the hospital?
  1. What support is available for me and my family? For example, can I talk to other families that also have children with heart defects? Do you provide financial, nutritional, and mental health support?

Looking Ahead:

  1. What are the expected long-term results for this heart defect and its procedure? What is my child’s life expectancy or how long is my child expected to live? Are there other possible life-long problems that I need to watch out for?
  1. Thinking about how my child will grow and develop, what should I expect from them as a preschooler, school-age child, a teenager and as an adult?
  1. As my child gets older, does your medical care provide a plan for transitioning from pediatric to adult care?


KEY IDEAS

Procedures – These questions can be used to talk about a number of treatment options including surgery or cardiac catheterization.  Cardiac catheterization, which is not surgery, can be used to find and treat some heart conditions.   During the catheterization the doctor uses a long, thin, flexible tube that is inserted through a blood vessel.

Number of procedures – Total number of procedures performed at a center may be an indicator of quality, with caution given to centers that don’t perform many surgeries.  However, some heart defects are rare and the number of times a procedure is performed may be small, even at the biggest centers.

Survival Rate – Most babies live through their first 30 days after a procedure, a common measurement of success for surgeons.  It is important to ask about survival rates after 30 days, too.

Training – Some doctors have specialty training including certificates for pediatric congenital heart surgery.  Make sure your surgeon has this training.

Data sharing – Most centers collect information, or data, such as number of procedures, survival rates and outcomes, using national data programs such as the Society of Thoracic Surgeons (STS) Database or the Impact Registry.  Many centers now make this information available to the public.  If a center does not give their data to a national data program, or does not share their outcome data publicly, you should ask why.

 

THE IMPORTANCE OF TRANSPARENCY

At the Pediatric Congenital Heart Association (PCHA), our mission is to “Conquer Congenital Heart Disease.”  We believe that patient and family empowerment is essential to achieving this mission.

We support informed decision-making that will allow patients and families to get the best care possible.   Health information that is patient-centered (about the patient), accurate (correct), accessible (available to every person), and communicated in the right way is all part of patient and family empowerment, resulting in improved outcomes in both patient health and family experience.