Last week we discussed the issues that can cause the heart to beat too slow. This week, we look at what happens when the heart beats too fast. Carol Raimondi, completes part two of her resource on arrhythmias, this time covering tachycardia.
Fewer than 10% of adults with CHD are receiving recommended care
There is no cure
15% of babies born with CHD will not see their 18th birthday
25% of children born with CHD need heart surgery or other interventions to survive
#1 cause of birth defect related deaths
There is an estimated 2-3 million people living with CHD
CHD is as common as autism and 25 times more common than Cystic Fibrosis
40,000 infants are born in the US each year with CHD
Nearly 1 in 100 newborns are born with CHD
Congenital Heart Disease is the #1 birth defect
After receiving a heart transplant, Megan Horton, a Texas Children’s staffer shares how she celebrates the biggest gift she’s ever received . Happy Holidays, Everyone!
Twelve years ago, a family lost their daughter. Twelve years ago, a 17-year-old lost her best friend. Twelve years ago, friends, family and loved ones had to say goodbye to a girl who passed away too soon.
Twelve years ago, I received the gift of life at Texas Children’s Hospital with a heart transplant. It’s always hard for me to celebrate my “heart birthday” each summer, when I know a family is grieving. The girl who donated her heart would have been 27 this year. I hope her family would find joy in all the things I’ve been able to accomplish by receiving the gift of their daughter’s heart.
In the past 12 years, I’ve accomplished so much. I graduated from high school and college, moved to a new city, landed my dream job, celebrated so many birthdays and anniversaries, and traveled to paradise.
I was only 14 years old when I received the greatest gift of my heart transplant, and while I’ve faced many challenges, I’ve always tried to have a positive outlook on life and remember that my life is a gift.
Each and every Christmas, no matter what presents are under the tree, my greatest gift is always the fact that I am there to celebrate with my family with a strong and joyful heart.
I’m very blessed that I received my transplant when I did. Every day, 22 people will pass away because they didn’t receive an organ in time. Please sign-up to be an organ donor and make your wishes known to your family. If you’d like to learn more about organ donation, please visit DonateLife.net.
Megan Horton is a heart recipient and the blog content manager for Texas Children’s Hospital.
The Holiday Season is meant to be filled with family and joy. It can also be a time of great stress, especially for families with chronically ill loved ones. In today’s post, Becky Hunt shares her experience with losing a child to CHD as well as managing her own illness, and explains how to de-stress from it all around the holidays.
Ah, December! It’s the most wonderful time of the year! Time for enjoying the festivities of the season! Exciting, right?! Well, for many of us, the next few weeks bring along added stress that can dampen our spirits and make the season a little less bright. Making travel plans, buying gifts, driving the kids to this party and that program, it’s non stop! Most “wonderful” time? Talk about most STRESSFUL time of the year!
Christmas was always my most favorite time of year! That was until my world came crashing down on me many times over.
My story starts with a little girl named Gracie. My baby girl. Gracie was born August 2nd, 2012 with Hypoplastic Left Heart Syndrome, or “half a heart”. She lit up my life for 82 days. The girl who changed MY heart inspired me to start a non-profit organization that creates dream cakes for kids with Congenital Heart Defects to brighten their lives. 5 years later that non-profit, Cakes From Grace, is thriving and growing and reaching more and more heart families by the day.
3 years after we lost Gracie I heard the 3 words that no one ever wants to hear, “YOU HAVE CANCER”.
Me? Haven’t I been through enough? Why me? Why now? I have CAKES to bake!
But the truth is, Cancer seemed to be nothing compared to losing your child or even seeing THEM suffer the way she did in the hospital for 82 days.
But I am here 2 years later, gone through several surgeries, 2 years of treatment and no Cancer in sight.
After Gracie passed away I dove right back into work. Started 5 different businesses (like one wasn’t enough). And just buried myself in it. At first work was my place to hide, to escape, it was a distraction, a place I could numb the feelings and avoid the hurt.
My obsession with work grew and soon it turned into an obsession with stress. I couldn’t escape. I felt like if I stopped then the world would crumble beneath me. Like I was letting people down. Constantly giving of myself, my services, my time, never saying no.
Christmas was always my most favorite time of the year. That was until we lost Gracie. I found myself angry that there wasn’t a spot at the table for her. No gifts under the tree for her. She wasn’t there to decorate the tree with me or sing our favorite Christmas songs I always sang to her.
The Holidays for me started to turn into a chore. The lists, the gifts I needed to find. My loved ones started to become a checklist. Ok, that person is done, 3 more to go, and 1 week to get it done before Christmas!
The endless amount of things on the Calendar. Christmas concerts, parties we were invited to, family get-togethers, gift shopping, UGH and the standing in lines! When am I gonna have the time to put up a Christmas tree?! 23 days of December just are NOT enough to fit it all in!
Everything constant, work, grief, the to-do lists all piling up!
Then how in the world DO you fit it all in? How in the world can you DE-stress?
1. Master The Art of Saying “No”
You don’t HAVE to attend every party you are invited to. Make a list of all the parties you and your kids were invited to, have them pick 1 or 2 of them to attend, not all of them.
2. Skip The Lines
You don’t have to go out and stand in those lines waiting to purchase the ONE thing you came here for! Shop online if that stresses you out! Put up your feet and cuddle up at home! Let the USPS guy bring it to you!
3.Take Time for You
Instead of giving your spouse a list of things you would like for Christmas, as a gift, ask him to take the kids out for a few hours while you read a book or watch a Christmas Movie and drink a glass of wine in a QUIET house. Ah, doesn’t THAT sound nice?!
4. Write a priority list, NOT a to-do list!
Instead of freaking out over the things you need to get done, try to organize your list in order from what the top priority/needs to be done right NOW to what can wait for a bit.
5. Put the work DOWN
For some of us we can make our own hours, like myself. For others, you don’t have that luxury. But if you DO have the option, carve out at least 1 hour during your day to do something for you. Something that makes you happy. You’ll go back to work feeling refreshed.
6. Acknowledge Your Feelings
The holidays can bring up a whole bunch of emotions from sadness & loss to anger & frustration. It is OKAY. Just because it’s the ‘happiest time of the year’, does not exclude you from feeling those emotions. Forcing that “happy” on yourself can weigh you down even more.
What I’ve learned is you can’t take care of your house, your kids, your to-dos if you don’t take care of YOU first.
Life is so darn short, kids grow fast and days grow faster.
I challenge you this season. Take more time for you and your loved ones. Maybe this is the year you start new traditions of making home made gifts and cookies and treats instead of spending the time to shop, spending that time away from laughter and joy. Or in my case, just BAKE cake!
Laugh more, live more this season. I DARE you!
I consider myself a lifestyle blogger with a focus on all the things I love and am most passionate about!
I’ve gone, done and experienced a lot in my adult life and I have a passion for sharing and serving. From losing my first daughter, Gracia, to a Congenital Heart Defect at just 82 days old, going through Cancer treatments and surgeries over the past 3 years to running 5 separate businesses as well as a non-profit organization just within the last 5 years.
And now closing a toxic chapter in my life and choosing to start over. Starting fresh and following my BIG SCARY dreams of becoming an author, writing a blog, being a life coach, videographer, continuing to grow my non-profit and putting myself out there in hope that I may inspire and help someone going through their own struggles, triumphs and hurts.
I’m a work-aholic and a stress-aholic on the recovery train to freedom! My mission is to be the best me I can be and to help other women find out what that means for them too.
Learn more about Becky: https://www.beckyhunt.me/
The 2017 Teen Topic Series posts are all here in one place. Take a look back on the important issues discussed!
PCHA began its Teen Topics Series with a post about employing medical IDs as a useful tool. American Medical I.D.s, introduces IDs as one step toward families helping their teens take ownership of their own care. Read further on the importance of involving teens in self -care and for a special offer .
Going off to college is a major milestone in a young adult’s life. For many, it is the first time living away from home, from their parents, and from everything familiar to them. A chronic illness can complicate the transition. In this week’s blog, Abby Hack shares what it was like for her to gain her independence while managing atrioventricular block.
We heard from Abby Hack on heading off to college. Now, we will hear from her mom, Janice. Watching your child leave home for the first time can be worrisome, especially with cardiac issues to consider. Janice shares with us how she has helped prepare Abby to take greater ownership of her own care.
in September 2017, patients and families submitted the questions they most wanted answered. We caught up with members of PCHA’s Medical Advisory Board, at the Transparency Summit, to ask those questions. Check out the videos, featuring Dr. Marino, Dr. Madsen, Dr. Gurvitz, and Dr. Sood’s answers on teen and young adult topics.
As the seasons change, new milestones come and go. These can be especially trying times in the life of an adolescent with congenital heart disease, especially as they are undergoing the major transition of leaving the nest and going off to college, joining the workforce, or just moving far from home. Dr. Aaron Kay, Director of the Adult Congenital Heart Disease Program at Indiana University Health, has the following Top Ten list to help ease the transition and cap off, for now, PCHA’s Teen Topic Series.
This week former Cardiac Nurse, Carol Raimondi, provides us with the first of a two-part resource on arrhythmia and the various diagnosis and treatment. Up this week: Bradycardia.
Carol Raimondi is an adult CHD patient and nurse, living with Congenitally Corrected Transposition of the Great Arteries. She has had 4 open heart surgeries in her 40 years, as well as a pacemaker since the age of 6. After spending a large part of her childhood in and out of hospitals, she developed a passion for nursing. She went to school to become a cardiac nurse. Carol’s many hospital experiences helped her as a nurse to better understand what her patients were going through and to care for them with that much more compassion and empathy.
Due to worsening medical issues, Carol had to give up the profession she loved. That did not stop her from being a patient advocate, however. She joined her local hospital’s’ Patient Family Advisory Council, which she now co-chairs, and shortly thereafter she joined Mended Little Hearts Chicago(MLHC) as an adult CHD liaison. She then expanded her work in the CHD community by starting an adult and teen CHD group within MLHC and became an Ambassador for the Adult Congenital Heart Association. Currently she sits as the Pediatric Congenital Heart Association of IL(PCHA-IL) President. Her proudest moments are when she is advocating and raising awareness for the CHD community, both on Capitol Hill in D.C. and locally.
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.
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 😉”
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
With each CHD, there is no certain path, no one course looks like the next, and complications vary widely. Though a patient may have a specific structural diagnosis, different arrhythmias may develop over time, however patients and families are not always made aware of this possibility immediately. That’s why the diagnosis of an arrhythmia may surprise parents and send them for a loop, just when they think they’ve seen it all. This also makes it difficult for parents to know just how much to share with teacher and other adults in their children’s lives, just as Alison Connors shares with us this week.
I’m often wondering what to tell people when they ask me about our children. It’s something most parents think about I’m sure. What details will help this teacher, this coach, this babysitter take care of my child? What can I share with them that will give them a view of who they are while they are in their care? For me there is always this looming question of what to say when discussing my children. On one hand I want them to treat my children as the unique individuals they are, discover new things about them, but on the other hand we do have this elephant in the room which is CHD.
I am a mother of three with two children who have faced Congenital Heart Defects. Like most Heart Parents it’s not something you plan, but it’s our life and we do a pretty good job at navigating C.H.D. It is always on my mind what and how much to share especially since two of my children have irregularities in their heart rhythms or arrhythmia.
Arrhythmia isn’t something I thought about when my children had their open heart surgeries. Actually, it was never mentioned when they told me about their hearts and never mentioned until few years ago. I think in the medical profession they are more of the approach of “we will get to that hurdle when and if we get to it.” Even the vague definition for Congenital Heart Defects is ‘problems with the heart’s structure present at birth’ that doesn’t really lead you to believe you may also have “electrical” issues as well or it didn’t in my non-doctor mind. CHD has so many forms and complexities that there isn’t a one size fits all explanation or treatment, so I see their hesitation to lay it all out there. Unfortunately that makes CHD affecting your family a situation of having to roll with the punches of what is going to happen, or at least that is how I have felt.
About two years ago, we were told our daughter had 1st degree heart block. After 4 years of seemingly good appointments, it flung me back into that intense worrying state of mind that we were in for her first year of her life.1st degree heart block, once again something was affecting my child that I had never even heard of before. I remember thinking, “ok, block doesn’t sound good, especially when describing my daughter’s unique heart.” “Why wasn’t this mentioned as a possibility? Or was it, is that the same thing as a murmur? Maybe they mentioned it? No, I would have remembered that.” We were told not to worry, but of course one of my favorite quotes is ‘telling a mother not to worry is like telling water not to get wet.’ I remember crying in the bathroom after we got home from the appointment. Although I knew CHD was lifelong I felt like we were ahead of it or at least had it under control. Arrhythmia seemed like the scariest effect of her surgery. I may or may not have googled how much an AED costs.
With this new information we did what we could and I quickly learned that we did not in fact need our own AED. We did our research and we asked questions. It turns out that arrhythmia is pretty common among some patients who are affected by CHD. That was reassuring for some reason, at least she wasn’t the only one and her pediatric cardiologist was very familiar with this. We followed up about Holter monitor results and asked what to symptoms to look for in the future. We were told that pacemakers would most likely be in her future, but time would tell on when. We were met with some ifs and buts since, unfortunately, our cardiologist is not a fortune teller. Wouldn’t that be nice though? Note to self: google physic pediatric cardiologist. Just kidding. Fast forward just 6 months later and our youngest and second heart warrior was too experiencing irregular heart rhythms. This time, I was more prepared and less shocked. Of course his arrhythmia is not the same as our daughters, but arrhythmia was now on our radar so to speak. Isn’t it weird how things like this become your new normal? Now we had a new discussion point when it came to our kids and how to approach this new element of their health concerns added a new layer to who our kids are.
Thinking about my children at school and how to explain CHD and arrhythmia to their teachers worried us. I would go back and forth on how much to disclose at their schools. I wanted to keep them safe of course, but I didn’t want them to be known for just one thing, that being just their special hearts. We decided to air on the side of caution and give specific details about our children’s hearts to their teachers and school nurse. I am so glad we did because our daughter’s school nurse kept referring to it as congestive heart failure. Yikes, right? While we were worried what to share, our kids were busy telling everyone about their hearts and showing off their Holter monitors. They decided to take the lead and give full disclosure to anyone they met. We were surprised, proud and kind of felt silly. We worried what to say about the “elephant in the room” and how to say it, but when it came down to it, it didn’t matter. To their teachers, they were still just two happy kids in their school and their friends think it’s cool they had heart surgery. At this moment, we have things figured out, but of course life has a way of happening while we’re busy pretending we know what we’re doing and planning.
Two of our children are affected by CHD and have irregular heart rhythms. So where does this lead us? Like most Heart Parents we just don’t know what our children will experience next. This CHD journey isn’t written in stone and we will always have looming questions on what will happen and how to handle social situations well into adulthood. Will I one day have a heart warrior grandchild? Whoa, ok, slow down, but it’s already on my radar. We just have to stay tuned because with CHD we just don’t know exactly what path we will take. At least we no longer see CHD as an elephant in the room.
Alison Connors is a mother of three children: McKenzie, Jackson and Archer. Her oldest McKenzie and youngest Archer both had open heart surgery for congenital heart defects. McKenzie and Archer have been in the care of the PSHU team at Advocate Children’s Hospital in Oak Lawn, Illinois since birth. Alison has been married since 2009 to her best friend Christopher, and she recently went back to work as a 1:1 teacher’s aide for children with special needs. She and her family have a busy life, but she has a passion for volunteering and believes that there is healing power in taking part in something that is bigger than yourself. Having two children with CHD threw Alison onto a path she never expected to be on, but a path her family is very grateful to be on. It’s an honor for Alison and her family to share resources, give hope, and support to others who face the same situations that they have.