The Promise of Research for CHD, and Our Responsibility to Advocate

Advancement in standards of care and best practices can only happen with research.  This week, Margaret King discusses the implications increased CHD research has on not only the community but society as a whole, as well as how important it is for each one of us to contact our representatives to increase research funding. 

 

 

The Promise of Research for CHD, and Our Responsibility to Advocate

 

This past month, I and a group of several other local heart families were treated to an astonishing behind-the-scenes tour of the Mitchells’ research lab at Children’s Hospital of Wisconsin, where we learned about the vital work they are doing to identify the genetic processes, risks, and factors in CHD. Just a few weeks prior, I also had the opportunity to attend Mayo Clinic’s Feel the Beat event, where the HLHS Program shares research updates with heart families. Both of these research programs are committed to improving treatment of CHDs across the lifespan, with the further goal of exploring targeted treatments based on individual risk factors.

 

Many leading pediatric cardiology centers are working tirelessly behind the scenes to make game-changing breakthroughs for current and future CHD patients. From stem cells to genetics, new medical devices and drug therapies, and of course, developing best practices for everyday care and management, research underlies almost all aspects of CHD care. It has enormous implications for the quality of life and outcomes CHD patients will experience.

 

As members of the CHD community, we can advocate for lifesaving research funding to our representatives, as well as urge our friends, families, neighbors, and colleagues to do the same.

 

Research Breakthroughs: A ripple effect

 

With 1 in 100 babies being born with a heart defect, there is an urgent need for research breakthroughs in preventing and optimally treating CHD of all kinds. However, studying individual types of CHDs can have tremendous implications that extend far beyond CHDs themselves. For example, understanding the possible cascade of genetic events that causes hypoplastic left heart syndrome (HLHS) sheds light on the broader process of cascades that cause a number of complex diseases, many of which have stumped researchers for decades.

 

If we can offer anything from targeted stem cell therapy to genetically-tailored drugs for one disease, it is just a matter of time until these technologies can be used to treat a wider and wider range of illnesses.

 

These cutting-edge research discoveries have great potential to alleviate suffering, not just in the CHD community, but across entire our society. They offer hope that we truly can “conquer CHD” and many other conditions that have proved to be extremely challenging to treat and manage using the life-saving advancements of the twentieth century. While the breakthroughs of the past were revolutionary, we now know that we can do so much more if we put resources into the proper channels.

 

Advocating for Research: Our responsibility

 

Researchers and doctors cannot shoulder the burden of advocating for research alone. The more we help advocate, the more time they can spend on research and collaboration. As it is, researchers often spend a lot of time identifying avenues of funding and writing grant applications for scarce funds, which takes valuable time from their work in the lab.

 

Many of us understand the importance of advocating to our political representatives, but do we talk to our friends, families, neighbors, and colleagues about how important it is to fund public research through institutions like the National Institute of Health (NIH)?

 

The NIH is the largest source of biomedical research funding in the entire world, but the process is fiercely competitive, with less than 20% of applications being approved at any level of funding. The number of projects the NIH can fund, as well as what level of funding projects receive, fluctuates with the national budget.

 

Advocating not only for increased funding, but stability in the NIH budget from year to year, is of utmost importance to make sure the lights stay on in some of our most promising, dedicated labs. After all, when the lights stay on at the lab, researchers can shed light on life-and-death health problems that affect many of us personally, and all of us as a society.

 

Research takes an enormous amount of time, especially when dealing with pediatric populations and small pools of patients. Simply gaining approval for a clinical study is a complicated process, because researchers have to demonstrate their studies will not cause foreseeable harm to their subjects. With today’s advanced technologies, the studies we need in key areas like genetics and stem cell research are expensive, and can even face ethical and political hurdles. Many of them have several phases, each taking years to complete.

 

When scientific and medical studies of repute are finally completed, they must undergo peer review to withstand scrutiny from professional colleagues in their field. After that, usually further studies are needed, and even the most promising results need to be duplicated elsewhere before becoming mainstream practice. Each promising finding is simply a building block for further findings, hopefully leading to an eventual “big picture.”

 

Sharing Research with CHD Families: An institutional necessity

 

Touring the lab at Children’s Hospital of Wisconsin, and seeing firsthand how dedicated the researchers there are to helping CHD patients gave me new hope as a heart parent, as well as an inspiration to keep advocating for all the lives that will be touched by CHD. It gave me hope that there is either a cure or a radical shift in how we understand and treat CHD on the horizon.

 

Many heart parents rely on social media posts from other parents in order to learn about important research findings and the results of the latest studies. Many of us only hear about this vital work after the fact, and have little means of learning about the latest, cutting-edge discussions and studies that are happening at our own centers.

 

I commend Mayo Clinic’s Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) for their dedication to sharing their current research with families. Their blog and Facebook posts, as well, as their annual Feel the Beat gathering, which includes a science fair and demonstrations of their current projects for all ages, is refreshingly accessible. The biennial Heart Parent Education Day at the Medical College of Wisconsin/Herma Heart Institute also strives to inform heart parents about standards of care in pediatric cardiology, as well as their latest programs for patients.

 

I urge all pediatric cardiology institutions to get the word out about the great work they are doing–whether through a newsletter, blog, social media page, or in-person events–to the CHD community. Making in-person events family-friendly helps heart parents attend these events without the stress and expense of finding childcare. When heart parents are empowered not only with knowledge, but also the hope of such inspiring research, they are even more motivated to spread the word to their social and advocacy circles–which is a win/win for everyone.

 

*** Update***

Upon reading this article, one of our legislative champions reached out to us to share that this piece  “really helps underscore the Bilirakis-Schiff CHD approps letter for FY18 (attached)!  Give yourselves (and our CHD friends in Congress) some credit. These lawmakers are after all, #CHDWise 😉

Bilirakis_Schiff_FY18CHD

This reminds us of the work our legislators are doing because of our advocacy efforts. Advocacy works!!!!

We’d like to thank the lawmakers who are already supporting increased CHD research funding, as highlighted in the letter, but we can’t stop!  We need to develop more legislative champions!! You can help by contacting your reps and letting them know you want them to support increased research funding. 

To learn more about CHD related legislation and how to contact Members of Congress from your state, check out PCHA’s Post on the Congenital Heart Futures Act

 

 

 

Margaret King is the mom to the 9- year old mighty K-man, a spirited boy with half a heart who is determined to live fully, and is married to the awesome heart dad, Shawn. A content marketer and writer in Wisconsin, her other interests include hiking and being outdoors, reading, and avoiding going down the thrill water slides her son is passionate about. She hopes to have a small goat farm someday

Patient Engagement Tool – The Care Partnership Pyramid

It is often difficult for parents and loved ones to know what to do in caring for their child during hospital stays, and it can often be a difficult topic to discuss. Christine Martinenza, RN, and Janie Klug, MSN, have implemented this month’s Patient Engagement Tool, The Care Partnership Pyramid, at Nemours/Alfred I. duPont Hospital for Children, which aims to help foster conversation and understanding in how to best allow for parents and medical staff to work as a team.

 

Many infants born with congenital heart disease (CHD) are transferred to the Cardiac Intensive Care Unit (CICU) immediately after birth or diagnosis for stabilization. As the mothers are still recovering from the delivery, many babies will undergo their first of many surgeries. Following surgery, these newborns are at risk for life threatening complications, require minimal stimulation, and around the clock medical care. It is very common for the medical team to ask families to remain hands off during this critical stage. The period of time spent in this phase of care is variable and for some can be several days to weeks. As the baby heals, the medical team is able to lessen sedation, remove lines and tubes, and gradually increase the amount of stimulation. This process of de-intensifying support can be lengthy and sometimes unpredictable leading many families to describe it as a roller coaster of emotions. Continue reading

Teen Topics – Q&A: Your Questions Answered

Back in September, patients and families submitted the questions they most wanted answered. We caught up with members of PCHA’s Medical Advisory Board, at last month’s Transparency Summit, to ask those questions. Check out the videos below, featuring Dr. Marino, Dr. Madsen, Dr. Gurvitz, and Dr. Sood’s answers on teen and young adult topics.

 

 

Dr. Brad Marino – Transition, Staying in Care, Protecting Your Health

Dr. Marino is an attending cardiac intensivist at Lurie Children’s Hospital. He is a Professor of Pediatrics and Medical Social Sciences at the Feinberg School of Medicine at Northwestern University, also serving as the Director of the Center for Cardiovascular Innovation in the Stanley Manne Children’s Research Institute.

 

 

 

 

 

Dr. Nicolas Madsen – Activity, Drugs & Alcohol, Related Conditions, Staying in Care

Nicolas L. Madsen, MD, MPH joined the Heart Institute at Cincinnati Children’s Hospital Medical Center in July 2012. He is the Vice Chair of PCHA’s Medical Advisory Board.

 

 

 

 

 

 

Dr. Michelle Gurvitz –  College, Tattoos, Contraception, and Transition.

Dr. Gurvitz is an assistant professor of pediatrics at Harvard Medical School and a staff cardiologist with the Boston Adult Congenital Heart program at Children’s Hospital Boston and Brigham and Women’s Hospital.

 

 

 

 

 

 

 

Dr. Erica Sood – Behavioral Health Topics/School Resources

 

Dr. Sood is a pediatric psychologist in the Nemours Cardiac Center and Assistant Professor of Pediatrics at Sidney Kimmel Medical College at Thomas Jefferson University.

 

 

 

 

 

Thank you, Dr. Marino, Dr. Madsen, Dr. Gurvitz, and Dr. Sood, for your willingness to share your knowledge and experience!

 

Recap – Mental Health

We often shy away from discussing Mental Health, but in this series, patients share their stories and their struggles. We also hear from a psychotherapist, who has personal experience with CHD. 

Brittany’s Story, Living with PTSD

Beyond Survival, the Struggle with Anxiety and Depression – by Sydney Taylor

Courtney’s Story, A Mom’s Perspective

Redefining “Of Course” – By Christina Barbera

Catherine’s Story

A Q&A with Austin Wilmot

Recap – Donate Life Month

Read the stories of families affected by organ donation, those who received the gift of life and those who chose to share it. 

The Wait – By Bill Coon

Becoming a Donor – By Jennifer Weiner 

The Call – By Kathleen Sheffer

Choosing the Ultimate Gift – By Emily Inman 

An Extraordinary Miracle of Science – By Dr. William T. Mahle

A Tribute to Tristan – By Charity Roberts

An Indestructable Spirit – By Melissa West 

 

Teen Topics – Advocating for Yourself

Annaleci was taught at a young age how to speak up for herself. She found, as she grew up, just how important that is , especially when it comes to her healthcare and advocating for her needs.This week, Anna shares her story with us. 

 

My life growing up, from an outsider’s point was hectic, but this was my family’s normal. From the moment I was born nothing went as planned. The two young parents were expecting a healthy baby and instead 8 hours after I was born, were told that their child only had a 10% chance of living. Little did my parents know, that moments like that will be their normal for the rest of their lives. Even though I survived the first 2 surgeries after so many complications, my family and I have always lived on our toes. Just waiting for the next 6 month checkup to see if we were in the clear or if it was time. While I grew, I became more and more conscious of myself and that what I was born with will never go away.

My parents were the type to always answer my questions with complete honesty. Along with that they pushed for me to have a great understanding of myself. I don’t just mean the medical definition of my defect, but how to tell if something was wrong with my body. My mother, especially, taught me how to put how I was feeling into words, which, in return, taught me how to really talk to my doctors myself. From a very young age, I remember my mother telling me how important it is for me to do the talking at appointments. I am extremely thankful for that now because when I go to the doctors, I go in by myself and have the ability to sit down and advocate for my health.

I was not warned very much about the transition into adult care. In the beginning, I felt as if I was going to be clumped into a group of adults with acquired heart problems. I was nervous that I would be over looked, but I made my worries apparent during appointments. I was given a choice between staying with my cardiologist or switching to an adult CHD specialist. I decided to go with the specialist, and so far I’ve noticed that during my appointments we talk a lot more about my social life and what my future looks like. Also usually there is a social worker with us, who talks to me about transition, the mental emotional sides of things, and future plans/goals. During these recent appointments I have learned how important it is to be able to speak for myself. Along with that, I have gained a greater appreciation for all of the hard work that my parents have put into giving me the best education and medical care growing up. It’s not easy juggling everything from appointment planning to navigating the medical system. There are support systems put in place that really do help you navigate, what feels like a never ending pile of paperwork and questions. I have learned this past year the importance of knowing myself, and to accept that this is my normal, and that’s ok because I am extremely lucky to be where i am in life today.

 

Annaleci Lamantia is18 years old and lives in Western New York, in a small town named Avon. She was born with a complex CHD called Truncus Arteriosus Type 2. Her first open heart surgery was at only three days old, a second surgery was at two years old, and her most recent was at twelve years old. Annaleci has struggled throughout her life with chronic pain, a weakened immune system, and depression/anxiety. School wasn’t easy, but with determination and support from her family and peers, she graduated last year. Now at this point of her life, Annaleci is trying to figure out this difficult transition into adult care and working on managing her health on her own.