Cardiac Devices – The Elephant in the Room

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.

 

 

Cardiac Devices – Terri’s Story

Often times, CHD patients face issues with the rhythm of their hearts. In some patients, this can mean additional treatment is necessary, with either medication or a cardiac device. In this week’s post, Terri Elliott, an adult CHD patient, shares her experience with an arrhythmia that led to her receiving an implantable cardioverter defibrillator. or ICD. 

 

My name is Terri.  I am 61 years old, a wife, mother (of 1 daughter), grandma of 5, and a Licensed Veterinary Technician.  I was also the 1992 Hunter Jumper Champion in my state!! (…my cardiologist was not happy about my jumping fences on a horse, of course, until I WON!! LOL!)  I live an active/fulfilled life, despite living with CHD, arrhythmias, and a lovely ICD which I have named affectionately “my friend”.  My original defibrillator was named “Sparky”, it was replaced with a larger one and we are trying to bond!! I was diagnosed as a child with a VSD, Pulmonary Stenosis, LTGA, and a “blue baby” which I had surgery in 1960 (yes, with ether!)!  I have been told that I am one of the oldest complex congenital heart patients in Michigan). My childhood was difficult with much bullying to endure.  Funny (but sad story), the kids in my school teased me so unmercifully, that I told them that I would “give them my bad heart if they didn’t stop”!  Well, you can see how that would turn out (and did), so I did not have any friends, as they were then afraid of me.  As you can see, having CHD was not an easy feat, as a child.  More of this at another time.

Living with arrhythmias can be challenging.  Mine have caused me several trips to the hospital.  They feel as if my heart is racing like the “Top Thrill Dragster” at Cedar Point, OR  it skips beats like a “cell phone with bad reception”.  Either way, intense! Medication helps to control them, and if I don’t “listen” to them, (which I can usually hear or feel 80 percent of), I barely know they are there. That seems to be a learned trait.  There are times, however, that arrhythmias can make me feel like I will “pass out”.  Those are the difficult ones to deal with.

As for my defibrillator, well that is a totally different situation.  My defibrillator was placed after I had sudden cardiac arrest (due to v-fib) in 2009.  I was on life support, and when I woke wondering what happened, I was told that I needed one for “insurance”.  At that time, I had heart surgery to put in a shunt and implant the device.   Having a defibrillator is challenging, but also frightening at times. With my first defibrillator (“Sparky”), it was placed in my abdomen.  I did a lot of exercising and fractured wiring a lot!!  Funny story – My first fracture – I thought was my brand new smart phone!!  I remember wondering why I got the stupid smartphone in the first place, since it chimed relentlessly, and I could not figure out what was wrong!  The problem was that it was not my smartphone at all!!  It was ME!!  I had fractured wiring.  Surgery is always needed when something like that goes wrong.  But in “my friends” defense, it is always there to protect me.  It can deliver many joules of electricity to my heart if needed to save my life.  I have had 3 defibrillators, so far, and my current one is an advanced version of a sub-cutaneous unit.  I am one of the lucky ones in that none of them needed to “fire”.  Patients like me live in fear, have challenges, pain, can be limited, and sometimes breathless.  But, I for one, am positive, strong, determined, full of love, am caring, and even defiant!!

Don’t be afraid of your defibrillators!  They are there to help and possibly, keep you alive!!  That’s a lot of power in one little box!!  I have a lot to say after this many years living a life of CHD!  That, my friends, would need a bit more time and space to cover!  Another time and place!  Happy if this helps even one person!

 

Terri Elliott is a Licensed Veterinary Technician of 28 years who lives in Oxford, MI with her husband, Mike and their 2 dogs, “Madison” and “Charlie”. She holds an Associates degree in Veterinary Technology and is currently earning her B.S. in Business Health at U of M. She enjoys travelling and summer activities, especially golfing, horseback riding and swimming. Mostly, she enjoys spending time with her 5 grandchildren, daughter and son-in- law. She is a volunteer chairwoman at the Michigan Congenital Heart Walk and enjoys speaking at hospital heart events. She has just been accepted and trained as an ACHA Heart to Heart Ambassador.

Recap – Patient Engagement Tools

Take a look back at our Patient Engagement Tool posts.

 

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, has 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.

 

Transition Top 10 to Remember

As the seasons change, new milestones come and go.  This can be an especially trying time 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.

 

 

Comprehensive Single Ventricle Road Map

When a family learns their child will be born with a Single Ventricle CHD, they are thrust into a world of uncertainty. It is sure to be a daunting and overwhelming experience. The plan for care of these patients has not typically been clear. As outcomes have improved, providers have been able to imrove their plans of action. In PCHA’s first Patient Engagement Tools Series post, Michelle Steltzer, Nurse Practitioner from Lurie Children’s Chicago, shares their Single Ventricle Roadmap.

 

Cardiac Devices – Jarvik: For Smaller Hearts

PCHA’s next series introduces the various Cardiac Devices involved in the treatment of Congenital Heart Disease and the associated conditions. In the first post, Dr. Adachi tells us about the Jarvik for small hearts, a ventricular assist device used to help pump blood through the body. 

 

At our institution, we are working to create a smaller, implantable ventricular assist device
(VAD), specifically designed for small children. This device is called the Infant Jarvik VAD, named
for Dr. Robert Jarvik, the inventor of the first successful total artificial heart.

Why do we need this device?

In the world of pediatrics, most VADs are pulsatile, which means they pump like the heart.
However, these sometimes fail. This is why most adult VADs are now continuous flow pumps,
meaning they help push blood through the body using an impeller. Currently, there are no
pediatric continuous flow devices available for our smallest patients. We are hoping to change
that with a small, AA-battery- sized device.

It is more challenging to make a smaller pump with a favorable performance. After failing to get
FDA approval two years ago, Jarvik made significant design changes, and I came on board to test
the redesigned device in animals as a preclinical trial. The data we collected was much more
favorable than the previous testing, resulting in approval for a clinical trial by the FDA. The
Pumps for Kids, Infants and Neonates (PumpKIN) trial has just begun with seven major pediatric
heart centers in North America, including Texas Children’s Hospital, ranked #1 nationally in
pediatric cardiology and heart surgery by U.S. News & World Report.

Currently, hospitals across the country have limited options on the types of patients they can
support. For example, at Texas Children’s, we implant about 20 to 30 VADs each year. In many
of these cases, we have to use an adult device in a child, which inevitable causes patient-device
size mismatch. If the Jarvik infant pump becomes available, that may change device support
paradigms, leading to more potential candidates who can benefit from this implant at hospitals
nationwide.

 

 

Dr. Adachi has written extensively regarding surgical, morphological, and physiological aspects of congenitally malformed hearts. His clinical and research interests also include pediatric heart failure and mechanical circulatory support including ventricular assist device and total artificial heart. He is also studying cardiac cellular and sub cellular differentiation prior to and following application of mechanical assistance. He also has an interest in pediatric lung transplantation. For better preservation of donor lungs, he seeks to develop a pediatric-specific lung preservation device for deployment in the lung transplant program at Texas Children’s, which is the largest in the world.

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 – The Top 10 Things to Remember

As the seasons change, new milestones come and go.  This can be an especially trying time 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.

TOP 10 THINGS TO REMEMBER

  1. Congenital heart disease requires lifelong follow-up
  2. Where operations were completed
  3. How to find a copy of all operative reports as available
  4. The current list of medications, especially blood thinners and rhythm drugs
  5. If they have a pacemaker or not, and a wallet card
  6. Whether they need antibiotics before dentist, tattoos, piercings and similar procedures
  7. What restrictions their heart disease places on activities they can do, and how that can affect jobs, etc
  8. Need to maintain health insurance whenever possible
  9. How to find a new doctor that specializes in their disease if they have to move
  10. Who to call if they have any questions or concerns

 

 

Congenital heart disease requires lifelong follow-up

Many patients with CHD feel well at this point in their life, and in many cases, without significant symptoms, they may not see the need to see a doctor.  There is a common misconception that CHD can be “cured” (which is possible in a very small minority of lesions).  Some conditions require follow-up more frequently than others.  The “transition” period is an especially risky time for teens to become “lost to follow-up” as they may not necessarily know how to make their own appointments, and may not know how to find a new doctor.

Please discuss with your CHD provider who they should be seeing as they become adults, and if your child has not seen a CHD provider in the last 12 months, now would be a great time for a quick visit to make sure your teenager has a better understanding of their specific problem and how frequently they need follow-up.

 

Where operations were completed / How to find a copy of all operative reports as available

Ideally, your family would already have a copy of all the operative notes from all surgeries, catheter procedures, pacemaker implantations, and electrical studies of the heart.  A great deal of time and unnecessary testing can be saved if you have a copy of this information. Knowing the exact history of what was done, who it was done by, where, and when can really help a new CHD physician rapidly identify the best strategies for follow-up for your child.

 

For example, it is very helpful to know what kind of artificial valve, as well as what size of valve, was implanted. It can help a CHD physician understand how long to expect the valve to last without replacement, as well as the likelihood of being able to replace it in the cath lab, versus being able to follow by just echocardiography or cardiac MRI imaging.

 

 


The current list of medications, especially blood thinners and rhythm drugs

If your child is on Coumadin to prevent a blood clot, this is incredibly important information.Likewise, rhythm control drugs are important to know about. Many of these drugs will have interactions with other new drugs that are commonly prescribed, for example, antibiotics.  In some cases it may be important to consider getting a medical bracelet for your loved one in case of emergency.

 

 

If they have a pacemaker or not, and a wallet card

A wallet card identifying the manufacturer of a pacemaker or defibrillator is very important, especially in case of emergency.  You don’t want to think about bad things happening to your loved one, but if they suffer an ICD shock and are temporarily unconscious and unable to speak for themselves, emergency personnel with access to this information will be much better able to care for your child.

Additionally, as patients move, they often will need to have one cardiologist for the “plumbing” and another for the “electrical work.”  It can save a lot of frustration to know ahead of time that a patient requires appointments with both types of cardiologists, and at most centers we can make arrangements for your loved one to see both types of cardiologists at a routine office appointment on the same day

 

 

Whether they need antibiotics before dentist, tattoos, piercings and similar procedures

Although endocarditis is rare, the consequences can be very severe. Guidelines changed about 10 years ago, but overall whether or not a patient needs endocarditis prophylaxis is a matter of clinical judgment. I advise you to ask your physician or other provider about this.

 

 

 

 

What restrictions, if any, their heart disease places on what type of activities they can do, and how that can affect jobs, etc

 

If your child is not allowed to lift heavy weights due to their condition, they should be steered toward a job that does not require heavy physical activity.  For the most part, pediatric cardiologists already do an excellent job with this type of counseling.

 

 

 

Need to maintain health insurance whenever possible

Fortunately, at least for the time being, CHD patients can remain on their parents’ medical insurance until they are 26 years of age.  This policy gives ample time for most patients to have a plan to have insurance for themselves, although there are exceptions.

Without insurance, many preventable things can’t be appropriately prevented.  Virtually no one can afford open-heart surgery, catheter procedures, or other major heart procedures out-of-pocket.  If your family does not have private insurance, please ask your care team for resources to learn how to find alternative insurance through Medicaid or other similar State programs.

 

How to find a new doctor that specializes in their disease if they have to move

A great resource on the web is the Adult Congenital Heart Association clinic directory, which can be found here.  This directory can be searched by each state and virtually every large city currently has a program listed on the website.  Contact information to help you make an appointment is available in this directory.

You should also discuss with your CHD care team which doctor they would recommend.  For some very complicated types of congenital heart disease, it may be important to determine where to move based on the availability of appropriate ACHD resources.  Of course, in many cases, patients may still continue to “go home” during summer and college breaks and continue to see their original cardiologists.

I would recommend that if a young adult with CHD lives more than a few hours away from their hometown that they should have at least a one-time “checking in” appointment at a local hospital or clinic, so that they can have their chart on file in the electronic medical record of the nearby hospital, mainly in case of emergency. Also have a plan in place for where to be transferred in case of a serious medical emergency.

 

Who to call if they have any questions or concerns

This may be the most important issue.  The default option in case of emergency is the emergency department; however in many cases, a timely call to the right person can save an unnecessary trip as well as a lot of frustration. You should discuss with your current CHD care team who to call in the future, and when.  Many routine and unexpected questions are going to occur throughout your child’s life, so knowing who to consider a “medical home” is quite valuable.

 

 

 

 

Dr. Kay is the Director of the Adult Congenital Heart Disease Program at Indiana University/Indiana University Health.  He is trained in both Adult Cardiovascular Medicine and Pediatric Cardiology.  He is originally from Huntington, Indiana and has degrees in Spanish and Engineering from Purdue University.  He completed training in Internal Medicine and Pediatrics at The University of Cincinnati/Cincinnati Children’s Hospital, and completed a dual fellowship in Adult Cardiology and Pediatric Cardiology at Nationwide Children’s Hospital and The Ohio State University.

 

Be #CHDWise and be a part of our Give a HOOT about CHD Campaign!

Here are a few key ways to join the movement:


Hello Echo!

We enlisted your help to name our cute, cuddly, and wise owl and boy did you deliver! With over 70% of the votes – we officially have a winner! With your overwhelming support, the name of the official mascot of The Pediatric Congenital Heart Association is hereby named Echo and we love him – Thank you for your participation!

 

 

 


Purchase an Owl

This adorable plush owl stands 8 inches tall. His fur is soft enough to melt anyone’s heart. The heart on his chest represents the community’s efforts to conquer congenital heart disease, making this a must for everyone you know who is touched by CHD. We will also be adding these owls to our existing care package program through our state chapters so they will included in select kits we provide to patients and families impacted by CHD.

Comfort a loved one, spread awareness, or simply show that you “Give a Hoot About CHD!” Echo can fly right to your doorstep by purchasing him from our online store or directly from the voting page!

 

Color with Echo

Break out the crayons, markers, colored pencils, or paint! Add color to the page and bring Echo to life! Now available, a printable coloring page to print out for the whole family to color as they wish.

Click the image or click here to Color with Echo!

Want to submit your finished masterpieces to be featured on our Instagram? Great! Just upload a picture of your finished coloring page and email to Echo at Echo@conqueringchd.org


Success!

 

Our Give a HOOT booster campaign has ended but because of your amazing support we were able to sell 159 shirts to raise $1810 to directly impact the lives of CHD patients and families through our programs like public reporting, the guided questions tool, care packages, and the legislative conference. Shirts will be delivered 2-3 weeks AFTER the campaign closed on 11-15-17

CLICK HERE to check out the shirts and view the supporters

 


Use your Social Media talents as we work to reach new families!

It’s your month to shine and show your friends and family what it means to be #CHDWise!

This year has been a great year and our social media following has grown exponentially, allowing us to reach more families than ever before. We’re currently at 16,000 likes on our facebook page and we would love to be sitting at at least 16,500 followers by the end of the year! The more patients and families our message can reach, the greater the impact that we can have.

Join the Social Media Storm

During the month of November, you helped us cover social media with CHD facts and faces. Like, share, comment and tag using the hashtag #CHDWise.

KEEP IT GOING!

In the know – Help others understand the impact of CHD and what the Pediatric Congenital Heart Association is doing about it by sharing our memes.

Make it personal – Using the hashtag #CHDWise, share stories and photos about about how you and your family are #ConqueringCHD. This is all about sharing how Congenital Heart Disease impacts patients and families and how we, together, can educate everyone to be #CHDWise. Don’t forget to tag us on Facebook, Twitter, or Instagram!

Invite others – we can do the work for you – simply guide them to our media pages.  Ask them to like or follow us.  We’ll make sure they STAY engaged!  Click on an icon to find us:

Facebook twitter-button iglogocolor

Encourage your Members of Congress to be #CHDWise

Tell your representatives why they should give a hoot about CHD!  Ask them to join you in #ConqueringCHD by becoming cosponsor of the Congenital Heart Futures Reauthorization Act (CHFRA).  Click here to learn more and see if your lawmaker has already signed-on.  If they have, be sure to thank them for #ConqueringCHD!!


Check out what’s happening in your neck of the woods

Help improve the lives of those with congenital heart disease and their families through direct support and education – meeting families where they are.  Through local activities like peer-to-peer support, care package distribution and educational materials, we are working directly with patients, families and medical professionals impacting one life at a time. Get connected to a chapter near you.

 

 


A Great #CHDWise #GivingTuesday

 

#GivingTuesday is a day that the world recognizes the importance of giving back.

This global day of giving follows Black Friday and Cyber Monday and encourages communities to contribute to their favorite nonprofits and help kick off the giving season!

It’s a great way for us to reach new audiences who may not be familiar with our mission. Our goal was to raise $6000 so we can give 1000 Echo Owls to patients and families who have been hospitalized due to Congenital Heart Disease and WE DID IT! And it’s all because of YOU! Between the generous #GivingTuesday donations and the recent “Buy One. Give One.” Owl purchases we have reached our goal of funding 1000 owls to give to patients with CHD – IN JUST ONE DAY!

There’s still time to help us send even more owls – your donation matters. Your Buy One. Give One. matters.

Donate here: https://app.mobilecause.com/form/D_3qgg?

Owls available for purchase here: https://pediatric-congenital-heart-association.myshopify.com/products/owl


Finally, Celebrate how #CHDWise you are and all we are doing, together, to Conquer CHD! Don’t forget to use the hashtag #CHDWise when you share your stories and pictures 

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