Prevailing Over the Unexpected

Continuing our month long celebration of mothers, Jessica Chenevert, who is an advocate, committee member, and Social Media Coordinator for the Pediatric Congenital Heart Association, shares how CHD has shaped her perspective on motherhood. 

There’s changing table stocked with diapers, wipes, and creams. The book shelf is packed and the stuffed animals are all in a row. The blue blanket hangs over the rocking chair. Picture frames waiting on stand-by to be filled with that precious face you are so eager to see. I’ve spent months decorating the nursery, making sure everything coordinates, and I’m as ready as I will ever be. I just want to meet the little man that has been swinging off of my rib cage for the last few months. Will he have my eyes? Will he have his daddy’s smile? I hope he is tall, smart, athletic, kind, and open minded.

As a first time expectant mom, my ideas of what motherhood would be like were nothing out of the ordinary. I was a healthy, active 25 year old excited to be a mom. My pregnancy was fairly typical with highs and lows, and everything was on track to have a healthy baby boy.

Or so I thought.

Barrett arrived and it was just like everyone told me it would be. It’s magical, unmatchable, and you are overwhelmed with loving someone so completely. I made this? He was perfect and I was in so much love.

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Our joy quickly turned to fear when after 20 hours of getting to know our son, we were told that he had developed cyanosis (his skin turned blue) and his pulse was dangerously low. He was prepped to be life-flighted down to Minneapolis Children’s Hospital where he would be diagnosed with Transposition of the Great Arteries (TGA), which is a reversal in the position of the two main arteries (the aorta and the pulmonary) which changes the way his blood circulates through the body, leaving a shortage of oxygen rich blood flowing from the heart to the rest of his body.

I had been a mom less than 24 hours. My life was not only changing big time by having a baby but now it was possible I would lose him one day into the job. Was this really happening?

Barrett went on to have an arterial switch operation at 2 days old that he sailed through with flying colors. Then, at 13 days old, he went on to have a coarctation repair operation. 4 days later and we were getting in the car for a 5 hour car ride home.

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Did that really all happen in 19 days?! This is not what I expected being a new mom would be like. What now? As I wondered what my next step as a mother to this little boy should be, I spent time getting to know him, wire and tube free, and establishing a routine for feeding, sleeping, and meds.

There are challenges we face every day, both of the typical toddler variety and the toddler with a lifelong disease variety, and through it all I have learned a lot more from my 21 month old than he has from me. Watching him overcome, battle, and grow through his disease has inspired me, empowered me, and enabled me to continue to change my perspective of motherhood and what it means to me as if it were a living breathing thing on its own.

Did I expect motherhood to provide me with daily challenges? Yes! Did I expect motherhood to throw me a curveball on day 1? No, no I did not. All you want as a mother is to have your child safe, happy, and healthy. As the mom of a child diagnosed with CHD, you have to come to terms with the fact that you can keep him as safe as you can, you can love him so he is the happiest kid on earth, but you can’t fix his broken heart and there is an uncertain future that you have to come to terms with.

So, on one hand, Barrett’s life with CHD has changed my perspective on motherhood immensely just based on the fact that I didn’t see CHD coming. On the other hand, it has not changed it at all because the day I became a mom is the same day I became a heart mom. I know no other way to be a mom. I am Barrett’s Mom and he is without a doubt the best thing that ever happened to me. He makes me strong, he makes me brave, and he inspires me to fight alongside him.

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My heart warrior has taught me that life happens in an instant, anything can happen at any time, and I need to stop feeling guilty about not being able to control that part. I can control my impact on CHD and if you know me, you’d know that CHD should be a little scared. I am one of those feisty, smart-mouthed, short Swedes that frankly just looks terrifying coming at you with mom bun hair, beady little enraged eyes, and the smooth stride of a velociraptor.

I’ve never been good at just being a participant. I like to be armed with information, as involved as I can, and be someone that others look to for whatever they need. I joined PCHA by deciding to fly solo to DC for the Congenital Heart Legislative Conference, and share our story with Members of Congress. I wanted to make a difference for Barrett’s future, connect with a community who gets it, and to fuel this newly found passion that my hero showed me the way to. It worked. I am hooked. If Barrett is going to battle CHD his entire life, well then I am too.


12294635_10106917302108060_6571083359693711671_nJess lives up the North Shore of Minnesota with her husband Nolan and their son Barrett “Bear” and their dog Bailey. Barrett was born with Transposition of the Great Arteries & Coarctation of the Aorta. With a background in several aspects of the medical field Jess. Joined PCHA shortly after Barrett’s Birth and subsequent diagnosis. Now a stay at home heart mom she strives to be an active volunteer as an advocate, committee member, and Social Media Coordinator for PCHA.

Expecting a Rainbow Baby: Pregnancy After CHD

PCHA is fortunate to have Jen DeBouver share her experience and advice on pregnancy after CHD. She is currently expecting Nina Delilah, her rainbow baby, a child born after a miscarriage, stillbirth, or child loss, this August.

It came as a total surprise. Pregnant after 3 ½ years since losing my son Asher to CHD. So many emotions started pouring through me – excitement, happiness, fear, anxiety, complete worry. Unfortunately, I have been through two separate big losses. My daughter Olivia was stillborn from what we believe may have been a blood clot due to not knowing I have MTHFR, a gene mutation, in November 2011. 11 months later, my son Asher lost his battle to CHD after developing blood clots. He was 6 weeks old.

As soon as I found out I was pregnant, I called my doctor’s office. I needed to know what the plan was for this pregnancy. How were we going to prevent another loss? Did the baby have CHD? I wanted to make sure I did everything in my power to make sure this baby was as healthy as could be. Since doctors in the past told me Asher’s heart defect developed before I even knew I was pregnant, I knew the first trimester was the most critical. As moms affected by CHD, we can make ourselves go crazy thinking if we had only eaten this, or done that, then maybe this wouldn’t have happened.

I am very fortunate in this pregnancy to have exceptional care. I have an OB that completely understands my situation and has told me that it is OK to request extra ultrasounds and call him with any worries, no matter what time of day it is. Having a considerate doctor like mine is very important when you have such a terrifying pregnancy. I have an ultrasound every month with either my OB or my high risk doctor, and if there isn’t one, I schedule one for the piece of mind that my baby is doing all right.

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With this pregnancy, I have two fears. Will Nina have a healthy heart? Will she live till birth and thereafter? I had my 20 week full anatomy scan recently, and was a complete wreck leading up to that appointment. At first, I compared Nina to her sister and was convinced she would be stillborn before we even made it to the appointment. Then, I cried the entire drive on the day of the appointment because I was so worried that we would find out she had CHD. On top of this, I was also nervous about the doctor and staff since it was the first time meeting my maternal-fetal medicine doctor. Thankfully, from the start, the nurse was nice and the ultrasound tech was amazing. She went over everything during the scan and told us exactly what she was looking at and the outcome. She checked for all of Asher’s heart defects and let us know our baby girl’s heart was healthy!

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After our scan we met with the doctor who was happy to tell us we were having a normal, healthy daughter. We have an echocardiogram scheduled soon just to look more in detail at her heart, but the doctor told us this was more for our reassurance and that they didn’t expect to find anything. Being in the CHD world, I know anything can happen between now and then, so there are still those worries that something could still show up, but they aren’t as strong as before. The worries with her being healthy will continue until she is in my arms, and probably long after.

Jen Shares Encouraging Advice on Going Through a Pregnancy after CHD

Find an OB that understands your fears.

Find a doctor that is understanding to your situation. If not, it will only cause undue stress. There are always other doctors, research and find one that you are comfortable with.

If you feel you need it, request additional ultrasounds, echocardiograms, or tests.

Talk to your doctor about additional tests that will give you peace of mind.

See a counselor to discuss your fears.

Counselors can be very beneficial in listening and helping you work through erratic thoughts, worries or stress. They can develop a plan to help you find peace and calmness.

Practice self-care.

A high risk pregnancy comes with a lot of worry and stress, neither are good for you or the baby. Find ways to practice self-care, such as yoga, meditation, and even relaxing baths, to help reduce any stress.

Have a good support system.

Having people that will listen can make a big difference. Talk to your support system about your pregnancy concerns, worries, or thoughts. This can be family, friends, or a support group. Rely on these people for support throughout your pregnancy.


DeBouver_JenniferJen, a huge advocate in helping those that have lost children, started her own foundation, Asher James Foundation, after losing her son to CHD and blood clots. She is the Bereavement Coordinator for Mended Little Hearts National and Chicago. Jen works as a Management Services Specialist for the Department of Labor and has a Bachelor’s in Sales & Marketing and a Master’s in Human Resource Management. She also served 4 years in the U.S. Army, and met her husband while stationed in South Korea. Jen is also involved in Native Veterans of Illinois. You can follow her journey of expecting Nina Delilah, her rainbow baby, this August on her blog, A Rainbow After All.

A Thank You Note to Our CICU Nurse

Nurses are an integral part of CHD care, and we are so thankful for them! During National Nurses Appreciation Week, in conjunction with our Mothers Blog series, we share a letter from a mother to her child’s nurse.

To the nurse who taught me how to be a new kind of mother,

We raced through the CICU doors, but I stopped short as we entered the room I was told contained Nicholas. It was just an hour earlier when I kissed my son goodbye, as he was placed in an isolette for helicopter transport to another hospital. To save his life. Just two days earlier, I had been snuggling, nursing, talking to my seemingly healthy newborn. This is how I knew motherhood to be. And in the blink of an eye a heart defect was discovered, and he was suddenly critically ill.

Walking into an unfamiliar room a hundred miles from home, I didn’t see my baby. What I saw was a myriad of tubes running from foreign machines to a motionless body, suspended on a platform, highlighted by an overhead warming lamp. I didn’t hear my baby. Instead, I heard a cacophony of pumps and beeps contributing to the artificial environment.

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When I saw nothing but a surreal science experiment, you saw my son. You saw hope and potential. So, you loved him, talked to him, sang to him. And then you taught me to do the same. You taught me how to talk to him as if he could hear me. You taught me how to caress his forehead and hold his hand. You shared your hope with me, and taught me to do the same. You were the mother he needed at that moment, the mother I never imagined I would have to be, and you taught me how to be this new kind of mother, too.

Thank you from the bottom of my heart. Happy Nurses Day and Happy Mother’s Day. On that day, you were both.


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Amy is mother to Nicholas whose critical coarctation of the aorta was discovered through early CCHD screening research in 2005. The strength and support of the CICU team helped lay the foundation for a career in CHD patient advocacy. You can read more about Amy here.

Research Matters: An Innovative Treatment for Plastic Bronchitis – What it Means

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The Pediatric Congenital Heart Association is thrilled to bring our latest in the series titled Research Matters. In our commitment to make research meaningful and accessible to patients and families, volunteers along with members of our Medical Advisory Board have created summaries of important research and describe what it means for you.

Plastic bronchitis (PB) is a rare but life-threatening complication that can arise following the Fontan procedure. PB patients develop large, rubbery plugs or “casts” that obstruct the airways and can lead to asphyxiation. Problems of the lymphatic system, a network of organs and vessels that drains fluid (lymph) from tissues and protects the body from infection, are thought to play a role in the disease process, but how PB develops remains poorly understood. The journal Circulation recently published a study reporting findings of abnormal circulation of lymph fluid in most patients with surgically corrected congenital heart disease (CHD) and PB and significant improvement of symptoms in these patients following interventional approaches to block the abnormal flow of lymph. These findings highlight an innovative procedure that has the potential to offer significant long-term improvement of symptoms in patients with PB. You can view the abstract here.

About this Study:
  • This retrospective study expands on a previous case report1 and determines the extent of abnormalities in the lymphatic system of PB patients and the clinical response following interventions to block improper lymphatic flow. A retrospective study looks back in time using existing medical data and records.
  • The retrospective case series comprises 18 patients (between the ages of two and 15) with PB and surgically corrected CHD who underwent lymphatic imaging and interventions at the Children’s Hospital of Philadelphia.
  • The authors use advanced lymphatic imaging tests, including dynamic contrast-enhanced magnetic resonance (MR) lymphangiography to determine the anatomy of the patients’ lymphatic systems and the patterns of lymphatic flow.
Main Findings:
  • In 16 of 18 patients, lymphatic imaging revealed abnormal (retrograde) flow of lymph fluid from the thoracic duct into lung tissue.
  • Lymphatic embolization, a procedure that seals leaks in the lymphatic system using coils, special oil-based contrast agents or glue, was performed in 17 of 18 patients.
  • Significant improvements in PB symptoms were observed in 15 of the 17 patients who underwent lymphatic embolization at a median follow-up of 315 days.
  • Immediate complete resolution of PB symptoms was reported in 10 of 16 patients, with one patient being cast-free for over two years.
What this Means:
  • Abnormal pulmonary lymphatic flow, which the authors termed pulmonary lymphatic perfusion syndrome, is likely to be a major underlying cause of PB in Fontan patients with elevated central venous pressure (CVP).
  • Advances in lymphatic imaging tests will enable the detection of lymphatic flow disorders in PB patients that may go undetected using conventional methods.
  • Selective lymphatic embolization provides a safe and effective alternative to surgical thoracic duct ligation, which has also been used to treat PB.
  • Although short-term results are encouraging, the medium- and long-term effects of lymphatic embolization in PB patients remain unknown. A study that follows patients over a period of years (a longitudinal study) will be required to determine long-term outcomes of this treatment.
  • This study provides hope for PB patients and favorable long-term treatment outcomes have the potential to mitigate the need for heart transplantation in sufferers of PB.

1 Dori Y, Keller MS, Rychik J, and Itkin M. Successful treatment of plastic bronchitis by selective lymphatic embolization in a Fontan patient. Pediatrics. 2014;134:e590-e595.

 

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Michael Kim is a scientist and a father of two little girls. His oldest daughter Sydney was born with total anomalous pulmonary venous return (TAPVR) in 2011. He received his B.A. in Biochemistry from the University of California, Berkeley and his Ph.D. in Cell and Structural Biology from the University of Illinois, Urbana-Champaign. He and his family currently live in Miami, FL.

Mother’s Q&A Panel

Throughout May the Pediatric Congenital Heart Association is honoring Mothers by covering relatable topics through our guest blog posts. To kick off this month, we have five amazing moms of children diagnosed with CHD joining us for a Mother’s Q&A Panel.

Thank you for taking the time to share with us! Let’s get started with introductions. Can you tell us a little bit about yourself?

Jennifer Kasnic: I’m a wife and homeschool mom of two, one who was born with TGA (Transposition of the Great Arteries). I learn everyday from her how disabilities can be overcome. My husband, David Kasnic, is co-founder of PCHA, and tireless advocate for Congenital Heart research.

Esther Kinney: I’m a mother to four sons and one daughter, and a registered nurse since 2009.

Gina Ten Pas: I’m mother of 4 year old John, diagnosed with HLHS, from West Des Moines, IA.

Sara Schuh: I’ve been married for 18 years to my husband Tim and we have 3 kids, 2 girls and a boy, who keep us very busy in Wisconsin! I’m grateful for all of the inspiring kids and families we have met. When I’m not doing kid stuff I spend my days at Just Orthodontics where I get to work with an incredible group of people as we create beautiful smiles for our patients of all ages.

Stephanie Dorko Austin: I’m a North Carolina native, and live in Raleigh with my husband Will and our awesome and amazing daughter, Maggie. I work as a political fundraising consultant and serve on the Board of Trustees of Follow the Child Montessori School and the development committee of the Frankie Lemmon School.

First of all, how was your child diagnosed with CHD?

Jennifer: Piper was “blue” when she was born, so she was put on a ventilator then transferred to Children’s Hospital where she was diagnosed with Transposition of the Great Arteries (TGA).

Esther: During the routine growth ultrasound, the perinatologist noted that the left side of my daughter’s heart was smaller than it should be, so he ordered a fetal ultrasound, which is where we received the diagnosis.

Gina: It was a routine ultrasound around 20 weeks gestation. You know, the one when you find out whether a baby boy or girl is joining the family. The days following diagnoses were very sad but we were happy to discover that it was a little boy growing inside me.

Stephanie: One day after her birth, she had a heart murmur.

Sara: A disturbing heart murmur was found at a doctor’s appointment for strep throat and after several more appointments her CHD was discovered. She was 4 ½ years old.

Looking back on finding out your child’s diagnosis, what is one thing you’d tell a mother who has just learned her own child has a CHD?

Stephanie: You are not alone, there is a community of heart mamas who can and will help you.

Jennifer: Ask your doctor a lot of questions to ease your anxiety. There are many good outcomes, so try to stay positive.

Esther: Initially, I would listen and allow her to lead the conversation. I would answer as many questions as I could, and then help her find answers for the others.

Sara: Take care of you, which will be the furthest thing from your mind during this time. The last thing you do is think about what you need, but your child and your family will need you to be at your best.

What ways do you manage your worry or stress from dealing with CHD?

Sara: Talking to other parents and hearing their journeys, what has worked for them and what has not. Sometimes it’s hard to know which way to turn and someone may have just the answer you need, or be able to send you in the right direction for support.

Esther: Connecting to others through Facebook support groups and the subsequent friendships are the primary ways I have dealt with the stress. I also continue to engage in regular therapy with a psychiatrist and psychologist.

Gina: I cling to God’s promises. I remind myself that I am right where I need to be and I’m caring for one amazing fighter.

Jennifer: Talking with others with CHD children, keeping current on Cardiology appointments, and prayer.

And, what do you love most about your child?

Esther: Every single thing! If I had to choose one thing, I would pick her smile. The right side of her face is permanently paralyzed, but her lopsided smile is absolutely perfect!

Stephanie: Her huge personality and awesome sense of humor.

Jennifer: Piper is quiet but has a true fighting spirit. She is kind and patient.

Gina: I love my son’s humor. We are still celebrating April Fool’s Day at our house!

Sara: How her strengths shine so brightly through her eyes right to her very compassionate soul. Her concern for others is heartwarming!

Is there anything you wish you could have done differently with your child’s care?

Jennifer: I wish I could have been informed at birth of the severity of the problem, instead of waiting for hours without my child. I also wish that I could have held her more before she was transferred to Children’s.

Gina: I wish I would have found a trusted team of doctors sooner than what I did. Everyone among the knowledgeable was telling me to get a second opinion, but I was too overwhelmed to act.

Esther: I would not have allowed providers to make me feel badly about choices I made regarding the location of her care.

Sara: Looking back I wish that I would have asked more questions and reached out to other families for their support.

What has been your biggest struggle in dealing with CHD?

Esther: Juggling the responsibilities of motherhood. In addition to my daughter, I also have four sons. I wanted to make sure that they didn’t feel lost in the chaos.

Gina: Navigating the complexities of the pediatric heart world. I’ve been in this world for five years now and I still can’t wrap my mind around it.

Sara: Like many, I felt guilt that I did something wrong, that this happened to her and that she went undiagnosed for so long fighting to survive and through all those appointments and my endless questions somehow her CHD was still missed.

Jennifer: Probably the developmental delays that we have experienced but were not warned about. It was frustrating and I felt at fault.

As CHD impacts the entire family, what ways have you supported your spouse or CHD siblings?

Jennifer: Trying to stay positive in tough situations. As for siblings, trying to make them feel special at other times when they are not receiving as much attention.

Esther: I translate medical terminology into understandable terms. I researched the child life program at the hospital and connected my children with the resources, and I coordinated therapy for one of my sons – he no longer needs it.

Gina: I let my other children know that they too are of utmost importance to me and I love them very much. We have family meetings when we need to pull together for our little heart warrior.

Sara: Keeping everyone on the same page and informed about what’s happening with any of her appointments.This alleviates some of the fears siblings and other family members may have. We also make time for her siblings with us. They were feeling like she was getting all this special time with us, even if it was for doctor’s appointments.

How do you handle disappointments from any physical limitations your child may have, especially when your child compares him or herself to peers?

Jennifer: Try to remind her that she is special just the way she is, that she has overcome a lot and even though some things are harder, she is not a failure.

Gina: I’m not gonna lie, this is tough to see. He’s only four and he has now caught up with his peers but when he was recovering from his stroke, it was unbearable at first. I would give myself a mental pep-talk, reminding myself that God is one step ahead of us and doing what’s best for all of us.

Sara: She gets frustrated when her body cannot keep up with her, but I continue to encourage her to do as much as she can. We try to encourage her that everyone has different skills and to use what abilities she can contribute.

Esther: My daughter is not old enough to be aware of any differences. I expect the most difficulty will come from the social stigma associated with her face instead of her heart condition.

How do you prepare your children for questions or comments about their scar(s)?

Stephanie: We have always talked openly about her surgery and her scars. My supportive sister who has Tetralogy of Fallot (TOF) has never had any trouble with hers, so I have been very open and honest about it.

Gina: Just this morning, for the first time, I heard my 4-year-old heart warrior tell his older brother that he doesn’t like his scars anymore. I melted when I overheard his older brother say, “John, that’s what makes you tough! I wish I had cool scars like that!”

Sara: Her scar is a very big struggle for her and she goes to great lengths to cover it up any chance she gets. We continue to tell her that it is a sign of her strength and that we, and those who love her, are very proud of her. That scar may not feel like a gift but it is. The gift of life! As a mom, it is a reminder that when she’s upset about it, to try to be understanding of just how different it can make her feel and to be supportive as she learns to tell her story and share her journey to help others who struggle as she does.

Jennifer: Explain to her about her surgery (why the scar is there), that it is a sign that she survived and she should not be ashamed of it. Be proud!

As CHD is a lifelong condition, what ways are you preparing your children to care for their hearts into adulthood?

Jennifer: Educating her on how to care for her own general health, but also to keep up Cardiology appointments and dental appointments. Her health is not something that she can overlook.

Gina: When I give him his medicine, I say the individual name of each med right before I give it to him. Since some of these meds will be with him throughout his life, I think it’s good for him to learn the name as soon as possible.

Stephanie: We talk a lot about healthy living and we make her annual cardiology appointments as normal as possible. Having my sister as a role model helps a ton.

Sara: We encourage her to ask any questions she has at any of her doctor’s appointments and let her know how important her care is to us, but also how she must feel comfortable with talking to the doctors and their teams about what makes her heart different, and that working as a team is the best for her so her concerns matter.

And lastly, what is the greatest thing your child with CHD has taught you?

Jennifer: Be brave in the face of overwhelming odds and trust others.

Esther: Never underestimate a mother’s intuition when it comes to the medical needs of their child.

Stephanie: To treasure every minute and every day with her and with everyone I love.

Sara: That just when you think you have given everything you have somewhere deep inside you have more and that together you will get through each hurdle.

Gina: I’m humbled. I no longer have all the answers. My life is not as structured as it used to be. Somehow, in the midst of beeping machines and heart monitors, life became more peaceful, more beautiful, and more meaningful than before.

Thank you all for your insight and words of encouragement. If you’d like to join mothers, parents and those affected by CHD help conquer CHD, become a part of the PCHA community by signing up to join our network, and remember to follow us on Facebook!

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.

En Español: Cuestionario de Preguntas Guidas

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.