For tips and resources on how to advocate for your child in school and a Q&A with members of the CHD community on their school experiences, check out the links to the blogs below.
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
For tips and resources on how to advocate for your child in school and a Q&A with members of the CHD community on their school experiences, check out the links to the blogs below.
Read the stories of families affected by organ donation, those who received the gift of life and those who chose to share it.
Check out some of our favorite reads in the posts from PCHA’s National Reading Month Series
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.
Last week, we heard from Abby Hack on heading off to college. This week, 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.
Our cardiac story began about 16 years ago when my daughter was 2. At one of her pediatrician’s visits, the doctor heard an unusual heart murmur. The doctor ordered an EKG and discovered that she had an intermittent second and third degree AV block. The signals in her heart weren’t connecting as they should have been, causing delayed and missed beats. Abby didn’t show any of the usual symptoms for her condition such as shortness of breath, fainting or chest pain. In fact, it was just the opposite. She was a very active kid. Because she was asymptomatic, we, along with her doctors, decided to postpone putting a pacemaker in and instead monitor the situation. Our semi-annual visits turned into annual and then biannual visits and still no symptoms. It looked like she was outgrowing the condition.
Then, Abby started high school. She joined the swim team her freshman year and started to have chest pain while swimming. The doctors did the usual tests but the results were drastically different than before. Her heart rate on the 24-hour Holter monitor averaged 42 beats per minute. Running full out on the treadmill, she didn’t get above 95 beats per minutes. The doctors were surprised she wasn’t fainting. She needed a pacemaker immediately. Abby received her pacemaker in December 2013 when she was 14 years old.
The surgery was right at a time when she was starting her teen years. Not long after the surgery, I was at a swim meet for my younger daughter and one of the parents there started talking about the medical issues with their child and how it affected their swimming. It was a bit of a wake-up moment for me. Abby and I are both fairly private with our personal lives (our lack of posts on Facebook is one example) and I recognized that it wasn’t my place, as the parent, to be talking about Abby’s medical condition so casually. She was old enough to decide whether she wanted to reveal that she had a pacemaker, or not. Unless there is a medical reason for someone to know, I don’t need to bring it up.
When Abby was 15, we attended an event put on by Chicagoland Cardiac Connections for children with pacemakers and ICD’s and their families at Lurie Children’s Hospital. At one of the sessions, some parents were talking about their kids becoming young adults. I resolved at that time to get Abby to start taking some responsibility and authority for her medical care. We started out by having her make her own dentist appointments which gave her some confidence in a low risk setting.
Even before the pacemaker, I always encouraged the doctors to ask Abby directly what her symptoms were. This was really by default as I don’t consider myself having any inner nurse or doctor. I could do a pretty good job, even with my lack of medical aptitude, to describe her cardiac condition. But I was caught off guard at one appointment when the doctor asked about her pacemaker. She replied “I have a pacemaker to address my intermittent high degree atrioventricular block with pacing close to 100% of the time.” She did a better job describing it than I did! My encouragement for her to speak up at doctor’s appointments had paid off.
Abby aged out of the general pediatric practice last winter and in the course of changing primary care doctors, it was a good time to also switch over to an adult electrophysiologist. She wanted either my husband or me to go to the first appointment which was great as it is nice, especially with a new doctor, to have a second pair of ears. I showed her that she should come prepared with not only copies of previous records, but also a list of questions and concerns. In fact, she was the one that mentioned that the quarterly readings she does with her remote Medtronic device needed to be changed to the new doctor for review. She is now keeping her own calendar of dates for visits and pacemaker readings although I also put them on the family calendar so I can remind her just in case she forgets.
Abby is now 18 and is a freshman in college. She is majoring in global studies and plans to travel the world. She loves to exercise and her number one criteria in picking a dorm was to be near the recreation center. Working out is an important aspect of her life and the pacemaker has made this possible.
At age 18, parents no longer have access to their child’s medical records without express permission. Just like every other parent of a college student, I am helping Abby learn to navigate the health care system both at home and at school. This is challenging whether you have a cardiac device or not. Ironically, the most difficult task so far has been to get the college health center to accept her immunization records which they kept rejecting on a technicality. And, we have had a difficult time getting Abby some medication she takes unrelated to the pacemaker. She has learned a whole new vocabulary about medical records such as “requests for authorization” and that doctors’ offices still use some “ancient” device called a fax machine.
Abby and I found it helpful for me to access her online health record for our family health insurance plan and the online records at the school clinic. We can log on together to message her doctors or the school clinic as needed. A few phone calls have been necessary. Abby is no different than her friends–the hardest thing for teens to learn is that sometimes they need to pick up the phone and call someone. I also encouraged Abby to visit the health clinic in person which she found helpful.
Her college has a complete tolerance policy meaning that the police can be called for any reason, including drunkenness, without repercussion. Abby and I talked about the fact that there are bound to be people passed out from drinking on a campus of 35,000 students. But, it could also be a cardiac event, a diabetic episode, or a myriad of other conditions. Abby declared she would want to call for help if she saw someone in this situation, just as she hopes others would do so for her in the rare possibility one of her pacemaker leads broke and she fainted. Perhaps her pacemaker has helped her to learn compassion.
It is now up to Abby to take a more active role in her health and I have every indication she is prepared to be her own advocate. She still called with a bad cough to see if she should go to the college clinic (the answer was yes!). But, she understands, and can describe, her cardiac condition and is slowly learning how to work with the school health clinic and her doctors at home. I have done what I can as a parent and it looks like Abby is going to be just fine.
About Janice Hack:
Janice Hack lives in Chicago with her husband Brad and daughters Abby, aged 18, and Lydia, aged 13. She is the director of a small history museum in suburban Chicago and enjoys volunteering at her children’s schools and for history-related organizations. In her spare time, she likes to watch PBS shows (especially historical dramas), while walking on the treadmill. Both Janice and Abby have enjoyed being a member of the Chicagoland Cardiac Connections steering committee, particularly meeting others families who face similar medical issues. She is grateful for the wonderful care Abby received at Lurie Children’s Hospital.
I received a pacemaker at the age of 14, when I was a freshman in high school. Now I am a few months into my freshman year at the University of Illinois. Throughout my time in high school, I have been honored to be a part of the Chicagoland Cardiac Connections, an organization that puts on a yearly event for kids and young adults with pacemakers and ICDs. Through this organization, I have gotten the chance to meet many inspirational individuals with devices.
Due to the amount of time I was involved in the pacemaker and ICD community, I was never ashamed of my device yet I still wasn’t completely comfortable telling people about it. All of my high school friends knew about it, but that was really only because they had all been there when I had gotten my surgery and it would have been impossible to hide it. College, on the other hand, is different. When you are put in a new school with new people, you think about how you want to be defined.
Did I want to be defined as the girl with a metal box in her shoulder?
I had never wanted to be seen as fragile or weak due to my device, yet people’s first reaction when I informed them of my pacemaker was a look of concern. Hiding it felt wrong, but telling everyone was more trouble than it was worth. Instead, the path I have taken is one where I bring it up when it feels natural and slowly my friends are learning about it. One tip I have for those in the same situation is that the more nonchalant and relaxed about an issue, the more people will treat it like it is no big deal.
Going through new healthcare obstacles also proved to be a challenge for me. I had always taken a fairly active role in my appointments with my doctor, yet being expected to completely handle it on my own was something new. For the first cardiology appointment with my new adult electrophysiologist, I begged my parents to come with me to the appointment. When I got to college and began navigating the new health system, I spent many times on the phone with my mom asking how to sign up for appointments or talk to the doctor or simply just to ask if I was sick enough to go in. I spent my high school years craving the independence that came with adulthood, yet I now find myself wishing that medical independence wasn’t a thing at all.
Going to college is filled with new opportunities, yet also new fears, especially for those with a medical condition. Many people, myself included, spent their entire lives surrounded by those who know everything about them and have supported them through many things. College is definitely a shock at first, but slowly you start to see that it gets easier with time. Just as I am slowly getting to know my new friends and finding out more details about their lives, they are slowly getting to know what “makes me tick” as well.
Abby Hack is a freshman at the University of Illinois. She is a Chancellor’s Scholar who is studying global studies. She volunteers for Chicagoland Cardiac Connections, to help other patients and families living with cardiac devices. Abby loves to travel and hopes to be able to visit all seven continents one day!
How Medical IDs Can Help Teens with Self-Care
Adolescents living with congenital heart disease are a rapidly growing population1. Most young people living with a heart condition will need a regular review throughout their lives and adolescence marks the start of a new transition from pediatric to adult health care.
Experts recommend that developing the right behavior and responsibility in self-care should start as early as possible during a child’s teenage years2. A successful transition is central to managing their health such as timely follow-ups with primary care physicians, managing medications, and preparing for medical emergencies.
Medical IDs for Teens with Congenital Heart Disease
Medical IDs are a piece of engraved jewelry that teenagers can wear to take charge of their health in case of an emergency.
National health organizations recommend medical IDs for persons living with health conditions including CHD3. In an emergency, congenital heart disease can be hard to identify, especially when a patient becomes unconscious or is unable to communicate.
Teenagers with heart conditions can wear their medical ID as a bracelet or necklace where important medical information is engraved. Each medical ID is unique and should include the wearer’s name, heart condition, such as congenital heart disease or cardiomyopathy, implants such as pacemakers or defibrillator, prescribed medications, and in case of emergency contact(s). 95% of first responders immediately look for a medical ID because access to medical information is vital for timely diagnosis and treatment.
A medical ID can help reduce a young person’s anxieties and offer assurance that they can get the right help when they need it.
Self-Advocacy and Raising Awareness
Starting a conversation about congenital heart disease can be challenging for young people. They are at the stage where they need to belong or fit in with peers. Certain heart conditions can cause teenagers to have symptoms that are more visible than others, such as having blue tinted lips and nail beds or feeling tired4. At some point, teenagers living with CHD will need to communicate and answer questions that friends, classmates, and other people may have about their health.
Wearing a medical ID for congenital heart disease can open a conversation in a positive way about their condition and educate peers of how CHD should be taken seriously. It also opens opportunities for peers and older adults to show their support and advocacy for an adolescent’s health and well-being.
Helping your Teenager Choose a CHD Medical ID
Teens can have different views about medical alert jewelry despite its numerous benefits. The need to establish their identity and express themselves can influence their willingness to wear something that may not always reflect their style or personality. This is why it’s important to involve them in choosing a medical ID that they would love and be proud to wear. The good news is, medical IDs have gone a long way in terms of style.
Here are some considerations that you and your teen can make when choosing a medical ID.
1. Medical ID bracelet vs necklace – medical IDs should be worn at all times so go for the type of jewelry they’d be most comfortable wearing every day. One aspect to look at is a teenager’s regular activities such as attending gym class or participating in sports where wearing a necklace could be an issue. In this case, sporty or active medical ID bracelets are recommended.
Alternately, necklaces are preferred by teens who want to wear something that does not get in the way like a bracelet does. Consider how much flexibility is needed before making a decision on the jewelry.
2. Durability and price – medical IDs range in price depending on the type of material used to make them. Silicone IDs are considered a practical choice by many for its affordability, plus silicone IDs are waterproof and can keep up with most type of activities.
Medical IDs made with precious metals like sterling silver, stainless steel, gold, platinum, and titanium may be more expensive but are valuable pieces of jewelry to own that could last a lifetime.
3. Style – teens prefer wearing medical IDs that reflect their personality and it’s possible with new medical ID styles! They can also choose to custom build their own medical ID bracelet or necklace by choosing from a variety of chain, clasp, and charm styles.
4. Custom engraving – no two people are the same so medical IDs shouldn’t be either. Choose a medical ID that you and your teen can custom engrave with their own name (or nickname), precise medical condition, and their emergency contact information.
Engraving can be applied on the front and back of your medical alert jewelry. Look for unlimited engraving options so you don’t need to worry about counting the number of words or lines.
Medical IDs can help keep your teenager safe as they develop their own sense of responsibility and care for their own health. Having them wear a medical alert jewelry can let you enjoy peace of mind while giving your teenager the independence that they need.
PCHA Members Get 10% Off on American Medical IDs
The Pediatric Congenital Heart Association (PCHA) has partnered with American Medical IDs to make medical alert jewelry more accessible to its members. Members can enjoy a 10% discount on all medical IDs (5% on gold) and for each purchase, American Medical ID will give back another 10% to support PCHA’s advocacy.
To enjoy this special discount, enter the discount code PCHA upon checkout or start shopping for medical IDs here.
PCHA closes September’s Mental Health Series with Chistina Babera’s story. Christina shares her experience as a patient with us, highlighting the important role talking about mental health plays in destroying the stigma.
In some recent downtime on a day off, I had settled in to read a book written by Hanya Yanagihara, and there is a moment in that book that sticks with me. In it, one of the main characters says—of a recent illness—“Of course he will be okay.” But all he can think in his head is “Of course there is no ‘of course’. ‘Of course’ had left their lives a long time ago.”
This past October, after being twenty nine years surgery free, my world was completely shaken and turned upside down. I had gone in for a routine appointment, when my cardiologist noted a drastic drop in heart function and had discovered my mitral valve needed to be repaired as quickly as possible. Three hours post operatively, in the ICU, while still on a ventilator, I went into complete cardiac arrest. I woke up for the first time after surgery to my own CPR. This was my first memory.
I am a pediatric nurse. I understood everything the doctors were saying. I felt every single compression my nurse gave me, knew the medications being shouted out were medications we use in the code algorithms at work in my own hospital, and knew this was very bad. I couldn’t see much, but I could hear and feel everything. I knew what was happening. I couldn’t do anything about it. I remember thinking with everything I had that I needed to trust them and hope I wake up, telling them in my mind I wanted to wake up again, willing them to hear my thoughts. My last memory was of my doctor saying “Just shock her!”, and feeling the defibrillator pads being placed on me.
The subsequent month long stay in the hospital and the months after it, felt like I had fallen down a rabbit hole. We were all unprepared for the complications that followed. I could remember snippets of conversation between nurses and doctors outside my room. “Why is her rhythm this way?” “Why is her heart rate so low?” More tests were scheduled, pediatric cardiologists were called in to consult. “Can we get her original operative note from the 1980’s?” We could not—the hospital did not keep records that long. After many different tests, several calls to doctors from long ago, and one wonderful cardiologist who, on his vacation took time to search through his old microfiche files, we discovered, of course, that things were going to be more complicated than we thought. I had been a surfer, a runner (who needed lots of breaks, but still a runner), a hiker, and a volunteer for medical missions overseas, and here I found myself unable to walk the end of the hallway. I could feel my “of course”—the reassurances that things would go back to the way they were—slipping away.
Of course, we all know the statistics. If you live in this world, you know CHD is the number one birth defect, and you know all too well it does not receive the attention from the rest of the world that it deserves. Of course, you know more about your own defect or your child’s defect than many of the healthcare providers you come across. Of course, we know all too well that life can be very unfair, and of course it is always colored with its beautiful moments. But we are all so busy navigating every physical ailment and case management part of CHD that, of course, we do not take care of ourselves—of course we do not stop to think about the depression, the anxiety, the PTSD forming in the background. I had all of these things, and I was the last to know about them.
Of course I had anxiety—from worrying about everything that could still go wrong. In the months that followed, well, let’s just say the nurse practitioner that fielded all my calls and emails deserves a medal. Every temperature increase was a reason to suspect endocarditis. At cardiac rehab, I would position myself near the heart monitor, watch my own rhythm—no, this rate is too fast too soon– I would say to the nurses, yes, the ones that, you know, do this for a living.
Of course I had PTSD. It took me a long time to realize, that is okay. Of course, anybody that wakes up to their own CPR and fully realizes what is happening is going to constantly have flashbacks. I can remember watching an ER movie with my friend, where several times patients were getting CPR. During the first scene, I had been laying down, comfortable, and when the compressions started on the screen, I sat right up. And during the second scene, I got up again. By the third scene, when I was fully standing and pacing the room, it finally occurred to me what my mind was unconsciously saying: “I will not be lying down, in the same position I was in when I got my own compressions.” It was as if my body was indirectly telling me “Look, see? You’re walking. This is not you anymore.”
Of course I was depressed—for the life I had and how this “new” one would be different. Limited somehow. Of course I didn’t see it. I was sleeping into the afternoon because my body was “just recovering”. I was not eating because I was not as active and “just didn’t have the appetite”. The thing about mental health is the stigma associated with it, but the bigger thing about it is that, when you’re a CHD patient or parent, you get so used to terms like “warrior” and “survivor”, that of course, you don’t realize your mental health is taking a hit.
It was a doctor, an adult congenital heart specialist and a man I had studied under as a student, and that medal deserving NP, that pulled me into the office. During an appointment I had booked for a second opinion when I was (anxiously) worried about my heart, they pulled me in and very delicately discussed the changes they saw in me. What was important was the absolute validity they gave to all of them. They said he could not imagine what he would be like had they gone through my experience, acknowledged that it is life changing what we go through, and told me I need to recognize the importance of having gone through something life altering. We discussed anxiety, depression, and how to seek out resources for talk therapy.
This is huge. Half the time, it seems as though cardiologists do not recognize the importance of mental health, therapy, and how to find help, and other times, when they do, we are extremely closed off to the idea. We immediately go on the defense, assuming they are not paying attention to our physical symptoms, dismissing them as mental. Sometimes this is true, but sometimes it’s not. We fall into the trap of feeling stigmatized because there is such a stigma surrounding the need for help. And after all, we have gone through so much, we are always told we are so strong, fierce, courageous etc. that the idea of being emotionally fragile doesn’t seem to fit in with all these other adjectives that we are.
I share this story with you for a few reasons. In order for the stigma to be removed, we have to first be comfortable sharing our journeys, even the dark parts of it. Of course it is normal. But if we don’t talk about it openly and ask for help, we don’t even take the first step in removing the negativity associated with it. In order for any change to take place, the conversation has to exist. Part of me, the patient, feels that we need to be open, we need to stand proud, of our WHOLE story. Because without us unashamedly sharing our stories, the stigma will always be there.
And part of me- the nurse- sees the healthcare system and knows that, despite the best intention of everyone, real gaps remain. Of course they do. There is still so much we do not know. They can only be filled by people that live these experiences. Do not be afraid to fight for yourself, or for your children. Things like early intervention and therapy are huge. Do not be put off by the idea. Embrace it. And if you are not offered it, please ask. Everyone deserves to be aware of what resources are there. We are a family of first and second generation CHD patients. That matters. Our being here and how we tell our stories, sets a precedent for all those in our family who will follow, to have it that much better. “Words are, of course, the most powerful drug used by mankind.” -Rudyard Kipling.
Christina Barbera is native New Yorker, born with Cor Triatriatum, a cleft mitral valve, a patent foramen ovale, and several vasculature anomalies that include partial anomalous pulmonary venous return and a left superior vena cava draining to a large coronary sinus. After complications from her last open heart surgery, she has developed issues with her conduction system. She is a Registered Nurse, a Certified Pediatric Nurse, and she recently passed her boards as a Certified Pediatric Nurse Practitioner. She believes her patients teach her something new about life every day and constantly remind her to be grateful. She is currently in a doctoral program at Stony Brook University seeking her DNP and travels to Haiti on medical missions, providing care to children in an orphanage in the mountains over the Dumay region. She loves coffee, her dog, her friends and family, books, and anything water related, in no particular order.