Congenital Heart Disease in an Era of High Deductible Health Plans

Hello readers! This week, we have a fantastic post written by Mr. Kinney of the Herma Heart Institute, on how patients and families can gain a little piece of mind and take control when the medical bills are rolling in. The journey of CHD can be overwhelming in many different ways, and medical bills is a huge component of that. This post provides a step-by-step process that can alleviate some of the stress that families may have when it comes to those daunting bills. 

One Step at a Time:

Despite being the most common birth defect nationally, congenital heart disease can be scary… and isolating. Whether you as the reader are the patient, or your child is the patient, the physical and emotional rollercoaster can be relentless: the shocking realization that something is wrong, a painful journey to determine what options are and who is going to be your partner in this journey, the fear and unknown heading into any type of intervention, and an arduous recovery in even the best of circumstances. Just as things begin to settle down, some new mail starts to arrive. Medical bills.

This could be a hospital bill, a physician practice bill, a combination, or even a third party vendor bill for some diagnostics, lab work, or medical equipment. Perhaps it could even be an explanation of benefits from your medical insurer (which briefly shows what was billed for, what the healthcare provider is allowed to bill you, what the insurance company is covering and what is your responsibility as a patient/parent), well before you have any idea on the billing. After pouring all possible energy into taking care of yourself or your child, the aftermath can be overwhelming and seem impossible to navigate. Taking things one step at a time can help.

Take Good Notes:

Often times, this type of journey is completely unexpected and one is well on their way through the healthcare journey before they even think of the billing issues. I was recently at a family advisory committee meeting, and heard a mother giving this advice to another mom while we waited for the meeting to start. She detailed her struggles having been down this road before, and is now quick to verify names, confirmation numbers, authorization numbers, dates, and even company she is actually talking to regardless of what number she dialed (for the all too common third party). This doesn’t necessarily solve things from a financial perspective, however it does make it less painful to navigate.

Start With a Phone Call – Insurer:

As early in the process as possible, call your insurer to explain the situation. If this is before you’ve had any sort of diagnostics or intervention, great, but if not, this is still a useful step. Here you can speak to someone who can refresh you on the specific limitations of your plan; perhaps like most, you didn’t pay attention to any details regarding medical conditions you didn’t have, and now with this recent diagnosis you or your child needs additional services. Placing a call to your insurer will provide you with a refresher on deductibles for individuals and families, networks (ie: hearing from the facility that they are in network, only to find out they are considered tier 3), and any other limitations related to the specific diagnosis, (ie: only one outpatient echocardiogram covered per six or twelve month periods).

Explanation of Benefits and Bills:

After treatment, you will receive an explanation of benefit from your insurer and the bills from the hospital and/or providers and/or any third party vendors. Use these items to help you advocate for yourself. . A quick check to make sure the explanation of benefits matches the bill is always helpful to understanding if things are misaligned. Save these statements as they come in, even if there are multiple. As necessary, it may be useful to request a detailed bill from the hospital, which may give you more details on CPT/billing codes used or details on procedures performed which may have limitations in your plan. When speaking with your insurer, using the specific codes is helpful again to understand limitations, denials, or authorizations.

Don’t Worry About your Doctor or the Hospital:

It is not uncommon to form a lasting bond with the care team that saves yours or your child’s life. This doesn’t mean that you can’t push back or question bills, point out something that seems inaccurate, or request clarification. Often times, your care team is actually ready and willing to assist and may be able to link you up with information from their side (i.e.: authorization numbers, details, etc.) and very likely pushing both the health system as well as the insurer to keep things accurate and fighting to deliver the right care at the right time. While working on a particularly complicated bill with a parent a few years ago, we discovered an error where the billed amount didn’t match the explanation of benefits due to insurance shifting with the parent’s new job. After working it all out, and getting patient accounts agreement to send a revised bill which matched the explanation of benefits, the parent asked to talk to me privately. The parent was very concerned that their doctor was going to hear about our discussion and feel like the care team did something wrong or that the patient didn’t value their efforts to care for the family. This concern is incredibly common, however, most of the time, the care team will have no idea that there is an issue with billing, and even if they do, it is much more common that they are an advocate for the patient and family having timely and accurate billing.

Deductibles, Max Out of Pocket, HSAs, Flex Spending Accounts, and Government Aid:

Whether healthy or diagnosed with a chronic condition, it is additionally helpful to understand your health plan deductibles, max out of pocket expenses, and what access you have to health savings accounts (HSA’s) or flex spending accounts. A deductible is an amount the patient must pay before the insurer begins to pay, and is often coupled with a maximum out of pocket before 100% of expenses are paid. A simplified scenario might be a $5,000 diagnostic test, for a patient whose family has a $4,000 deductible, at which point a 90% coinsurance rate kicks in from the insurer, until the patient’s family hits their maximum out of pocket expense of $5,000. When we do the math in this situation, the patient would be faced with a $4,100 bill if their family hasn’t had any medical bills yet that year; $4,000 for the deductible, and an additional $100, as the insurer would only be required to pay 90% of the remaining $1,000. After an additional $9,000 in health care bills, the patient would pay an additional $900 in out of pocket expenses, at which point, there would be no further obligations to the family. This can be a staggering amount to pay for most families, hence, it is useful to explore with your employer if there is any access or matching to health savings accounts or flex spending accounts. Health Savings Accounts (HSA’s) allow individuals to divert $3,450 and families $6,900 of tax deductible income to special accounts designated just for medical expenses. If your employer does not offer a High Deductible Health Plan with a HSA, individuals and families can still pursue a flex spending account (FSA) on their own. These funds are set aside to ensure funds are available for the patient responsibility aspect of bills – while they aren’t always enough to cover the deductible, these funds can help accommodate high deductible impact. In our example above, a patient who had contributed $5,000 to their HSA would be able to use their HSA to cover all of their family’s medical expenses for that year. Further, while every state has different rules, it is quite common for a patient or family to also qualify for secondary government aid like Medicaid, even for working individuals or those who do not qualify outright for government aid based on income. It is worth exploring in your state your eligibility and especially if there is a Medicaid spend down policy, which lets one deduct medical expenses from their income to demonstrate need. This secondary coverage would kick in for all items designated as “patient responsibility” and further reduce the burden to patients and families.

Work with your doctor or provider on timing of tests (sometimes to space out, other times to occur after employer match, etc):

After working through this tedious process, one begins to have an understanding of the ins and outs of their plan, their medical condition, their benefits package, and even their government aid eligibility. At this point, one might discover that they are only allowed one diagnostic test per year, and yet, their provider has scheduled one every six months. Talk to your provider. Sometimes, they are willing to shift the testing to once a year. Conversely, if they feel the medical condition is such that this is required, they are willing to provide additional information to the insurance company to help them understand why there should be an exception in this case. Insurers often provide these exceptions, but may need additional information from your provider. Likewise, a test, procedure, or visit may be required regardless to address the medical situation at hand; in these circumstances, many work with their providers to schedule after their employer match, or later in the year to allow the HSA to fill up some more. The medical situation may not always allow for this flexibility, but without partnering with your provider and asking, they wouldn’t know to even try.

Other options include calling the hospital and asking if they are willing to settle for a lower amount or work out a payment schedule.

All things considered, it is not uncommon to work through all of the above, and still have a large bill on hand. At this point, call the number on your bill, and explain your situation. Many health care organizations will work with patients to understand financial need and income levels, and from there work on either a negotiated settlement amount or a payment plan.

Give yourself permission to work through these one step at a time. Healthcare finance is complex, in large part due to the fact that each and every interaction can be so wildly different than the next, even for patients with the same condition. Push back, question, advocate for yourselves, and help your care team understand the limitations of your health plan – at the end of the day the entire health infrastructure is here to take care of the patients, and even the billing office can be a crucial partner in managing one’s serious health condition.

 

Aaron Kinney was born in Oakland, California. He completed his undergraduate work at the University of California at Davis where he received a Bachelor’s of Arts degree in Political Science with a minor in history (2005). He holds a Master of Science degree in Management from New England University (2009), and a Doctor of Business Administration from the University of Wisconsin – Whitewater (2017). Aaron also served as a Medical Service Corps Officer in the United States Army from 2005-2012, serving as an aero medical evacuation officer, and earning a bronze star each for his deployments in Iraq (2007-2008) and Afghanistan (2010-2011). Aaron is currently the Executive Director of the Herma Heart Institute at the Children’s Hospital of Wisconsin in Milwaukee, Wisconsin, and a credentialed Fellow of the American College of Healthcare Executives.

Qualifying for Social Security Disability Benefits With a Congenital Heart Defect

Last week, we heard a patient’s story on the financial difficulties and challenges that come with CHD. This week we hear from another heart warrior, who comes with a hopeful message. Deanna Power shares her expertise with PCHA, and how patients of all ages may qualify for SSI.

If your child has a congenital heart defect, he or she may be eligible for Social Security disability benefits. The Social Security Administration (SSA) offers monthly financial aid for people of all ages who have serious conditions or illnesses. A CHD will not automatically qualify with a diagnosis alone, but many children with heart problems are eligible for assistance.

Technical Eligibility for Disability Benefits:

All children under age 18 will qualify for Supplemental Security Income, or SSI. These benefits are only awarded to people with a severe financial need. This means that your income will be evaluated on behalf of your child. While the income limits are strict, the good news is the larger your family, the higher your overall monthly income threshold will be.

For example, a single parent with one child couldn’t earn more than $38,000 per year while still having a child qualify for SSI. A two-parent family of five could earn more than $55,000 per year and still be eligible. You can view a chart on the SSA’s website to determine your family’s specific monthly income limit.

Unfortunately, technical qualification is very challenging for SSI, and is the top reason for children with CHDs to be denied Social Security benefits. The good news is that once your child turns 18 your income will no longer be recorded by the SSA, even if your child still lives at home.

Medical Qualification for Disability Benefits:

The SSA maintains its own medical guide, known colloquially as the Blue Book. The Blue Book contains hundreds of listings that can potentially qualify for disability benefits. All listings for cardiovascular disorders can be found in Section 104.00 of the Blue Book. There are listings for heart failure, recurrent arrhythmias, and congenital heart disease. Here are some ways a child with congenital heart disease could qualify:

  1. Your child has hematocrit of 55% of greater, measured at least twice within a one-year timeframe, OR
  2. Your child’s blood/oxygen level is less than 90%, or your child’s resting arterial PO2 score is 60 Torr or less, OR
  3. Your child has dizzy spells, fainting, or other symptoms directly related to cyanotic heart disease, OR
  4. Your child is completely unable to exercise due to insufficient cardiac and pulmonary function

There are more straightforward listings in the Blue Book as well. For example, any child with a heart transplant will automatically qualify for benefits for at least one year after the procedure. A child on the wait list for a transplant will also always medically qualify under at least one Blue Book listing. Finally, any infants less than a year old who have a “life-threatening” heart problem requiring surgery will qualify until their first birthday (or longer), given that doctors expect the condition to continue to be disabling due to the recovery time or impairment after surgery.

The Blue Book listings for cardiac problems are complicated and best reviewed by medical professionals. Fortunately, the entire Blue Book is available online, so you and your child’s cardiologist can determine if your child might be eligible together.

Starting Your Application:

If you are applying for SSI benefits on behalf of a child, you’ll need to do so at your closest Social Security office. Call the SSA toll free at 1-800-772-1213 to make an appointment to apply in person. Once you complete the application, you should hear back from the SSA regarding your child’s claim within five months.

Once approved, you can focus on what’s important: your child’s health.

 

Helpful Links:

 

Deanna Power is the Director of Outreach at Disability Benefits Help, an independent organization dedicated to helping people of all ages receive Social Security disability benefits. She’s currently thriving with Ebstein’s Anomaly w/VSD and is forever grateful for the Adult Congenital Heart Program at Boston Children’s Hospital. If you have any questions on how you or your child could be eligible for Social Security disability benefits, she can be reached at drp@ssd-help.org

The Ways we Pay for CHD

The theme for August is finances, and how the families affected by CHD pay for all the healthcare that goes into a CHD patient. This month we will be sharing stories and advice from people of all walks of life who come with many different perspectives. This week we will hear from a patient who shares their personal journey in paying for CHD, and all the struggles that comes with. Finances can be a very personal topic, and due to the personal nature of this week’s post, this contributor has asked to remain anonymous.

 

When I was 32, I learned that my childhood congenital heart defect (“CHD”) treatment bankrupted my parents.  When I was 34, my CHD treatment nearly bankrupted me.  I guess as a child, you never really appreciate your parents’ struggles, until their struggles become your own.

I was born a “blue baby,” grew into a “zipper kid,” and have now lived long enough to be labeled an Adult with Congenital Heart Defect (“ACHD”) survivor.  My childhood was spent in and out of hospital; I never really gave much thought to it as a child – it’s just the deck I was handed.  My family never had a lot of money, but my parents never burdened me with the financial struggle that my CHD treatment placed on them.  In those days, zipper kids were uninsurable; I never realized the gravity of that until I survived into adulthood.

I still consider myself a zipper kid, even though I am fortunate enough to be an ACHD survivor.  I saw a pediatric cardiologist until I was almost 30 when my insurance forced me to see an “adult cardiologist.”  My compelled transition into adult cardiac care led to a series of struggles, among the most palpable, a financial struggle. The CHD financial struggle is the topic of this blog today.

I recognize in writing this article that the term “struggle” is an unfortunate, yet fitting term.  In all respects, I am extremely blessed – I have a roof over my head, clean water, and food.  I was blessed to find doctors who could help correct my purple lips, fingers, and toes.  I have survived 9+ heart related surgeries, including 4 open-heart surgeries. I generally still have enough energy to work; I was able to pursue an education.  I know now, more than ever, that many ACHD survivors cannot say the same.

I recently read an article stating that ACHD care is among the most expensive in the world. At 34, I had a painful reminder of this fact.  I note that for this blog, I have selected one experience, among many.  My ACHD care/treatment has emptied my bank account more times than I care to remember.

This particular story begins on a sunny afternoon quite like any other.  After lunch I became suddenly very ill: sweating, fever, chills – I chalked it up to the horrible flu going around and went home, and got into bed.  I slept all weekend and then called into work on Monday…and then Tuesday.  My primary care doctor opined that I had the flu.

My symptoms persisted and eventually my ACHD cardiologist admitted me to the E.R.  Turns out I did not have the flu; I had endocarditis, a serious bacterial infection that was attacking my Melody Valve.  Although unheard of to me at that time, endocarditis is apparently common among CHD survivors.  My endocarditis infection kept me in the hospital for two-weeks, in which my insurance was billed over $350,000.  Upon release, my treatment continued for six more weeks with at-home intravenous antibiotic infusions; my insurance got a bill for over $10,000 for that.

Over the years my insurance premium has been on a steady increase.  I never had the luxury of employer-paid insurance because their HMO plans never covered any of my CHD providers.  So, despite being employed full-time, I had to maintain my private PPO insurance to survive.  This year, my insurance company raised my premium from $798 per month to $987 per month.  My insurance company also increased my annual deductible from $12,000 to $20,000.

My bout with endocarditis resulted in over $10,000 in medical bills.  Upon returning to work after hospitalization, I was promptly fired…just as I have been after every other major heart-related incident in my adult life.  (yes, discrimination, it happens all the time and yes, I know it is illegal.)

To pay for my medical bills, avoid bankruptcy, and keep a roof over my head, I had to zero out my bank accounts and sell my car.  The stress from that financial burden almost landed me back in the hospital.  I was fortunate that the unemployment board took pity on me; I was able to buy a few groceries.  Because of my CHD, I had hit the proverbial bottom.

I write this blog not as a doom and gloom or pity piece, but as an acknowledgement of all those zipper kids – and their parents – who are struggling to pay for CHD care and treatment.  It is expensive and it is hard, you are not alone.

I suppose I also write this piece to vent a bit of anger.  Because of the cost of my basic CHD treatment, I will never have financial stability.  I live everyday knowing that one major incident – like an inevitable surgery – is likely to result in bankruptcy, despite my “Cadillac insurance.”  I brace myself for the day when my “practically bankrupt” becomes actually “bankrupt.”

But, I’d like to end this blog on a bit of a higher note, so I am happy to report that I am rebounding (again).  That’s what us ACHD survivors do; we survive.  I got a new job – and my employer health insurance (mostly) covers my CHD providers.  Thanks to my employer sponsored healthcare, my deductible has decreased from $20,000 to $7,000 (a hint of sarcasm).  So things are looking up, and I know now that support for CHD zipper kids and their parents is growing bigger and stronger with each day that passes.

 

This individual’s diagnosis is TOF. But more specifically situs inversus with levocardia, pulmonary atresia with ventricular septal defect, atrial septal defect, and malposition of the great vessels. In adulthood, they also now have anteroseptal infarct and mild LV systolic dysfunction.

5 Ways Heart Families Beat the Summer Heat

The summertime sunshine can be a welcome treat after a long winter, but it can also be dangerous. Many people with complex CHD have difficulty tolerating the summer heat. PCHA recently asked the CHD Community, families, and patients to share what they do to beat the heat. This is what they had to say!

 

1. Hydrate! Hydrate! Hydrate!

Our bodies are made up of approximately 70 percent water. Water has many important functions in the body, including; regulating your body’s temperature, digesting food, and excreting waste. Children are at a greater risk of dehydration than adults. This is because in relation to their size, children have a larger proportion of their skin available to lose sweat and be exposed to heat. Additionally, children don’t always recognize that they’re thirsty, and if they’re not encouraged and reminded may forget to drink. Add Congenital Heart Disease into the equation and dehydration can pose an even greater risk.

Here are a few tips to help your kids stay hydrated in the summer sun:

  • Pack a water bottle to have handy whenever you go out. You can even try having a couple of frozen water bottles in the freezer ready to grab and go!
  • Encourage your child to drink water before, during, and after physical activity
  • Always offer and encourage water with meals and snacks, even if they don’t like it!

Tricks for when your kids don’t like or just don’t want water

  • Try adding slices of fruits such as lemon or orange to water, for variety and flavor.
  • Let your kids choose their own cup or bottle to drink from.
  • Be a role model! Make a point of drinking water with your kids.
  • Experiment with ice cube trays; kids can have fun freezing water into a variety of shapes and adding those ice-cubes to their drinks. Check out these great choices: Under the Sea, Star Wars, Stars & Hearts!

 

2. Indoor Activities

Depending on where you live, summertime temperatures can average anywhere between “Oh boy, I’m starting to melt a little bit out here,” to “Someone dump a bucket of ice water on me right now.” The anticipation for the last bit of snow to melt and the warmth that summer brings can’t arrive fast enough but, for some, it can be the moment you began feeling bad about not wanting to leave the comfort of your cool home for the hot outdoors. But despite the pressure to get out and have fun in the sun, you shouldn’t feel bad about staying inside with your heart warrior on those hot days – especially when their causing your cardiac kid serious discomfort.

 

3. Enjoy a Cool Treat

What’s summertime without ice cream? Clearly we know why July, the peak of summer, is National Ice Cream Month. Whether you’re rolling through the Dairy Queen Drive-thru, passing out popsicles by the pool, or busting out a pint of Ben & Jerry’s after the kids go to bed there are a lot of sweet treats that seem to take the edge off of a hot day. We followed up our “how do you beat the heat” heart poll question by asking our followers what their favorite flavor of ice cream was and who knew there were so many different flavors of Ice cream out there!?

Here are the top 5 flavors heart warriors and their parents prefer:

 

#1 Mint Chocolate Chip

#2 Chocolate

#3 Cookie Dough

#4 Peppermint

#5 Moose Tracks

 

4. Take a Dip

Making a splash in the pool or at the beach (or relaxing on a raft) is at the top of just about everyone’s favorite summertime activity list! It’s a great way to stay cool, and get everyone out of the house. Though it’s important to keep in mind each of your swimmers’ strength and that harmful rays can still do damage, even in the water. Be sure to tote the waterproof sunscreen when you’re hitting the water!

5. Soak up the Summer

Some of us just love watching those temperatures rise, soaking up the sun, and feeling that warmth on our faces. It’s important to remember moderation, too much sun can make you sick too! Encourage your Heart Warriors to learn their own limits, while still having fun! Remember to take breaks, find a shaded area if you can’t go inside, plan your outing when the sun’s not at it’s hottest, use a cooling sport cloth, and drink plenty of water!

You’re not alone in looking for fun ways to beat the heat. Love it or loathe it, summer is sticking around, so whatever you do be safe and enjoy it!

 

*Please note the information in this post is not meant to be a substitute for medical advice.

A 2nd Opinion: Finding the Right Care

Although we know it’s not Thursday, this week we’re doing a throwback! We are always working on improving the transparency between patients, and the doctors. In our continuing conversation of transparency, please read this family’s story in navigating the difficulties of finding the right care for  their little boy, John… Spoiler alert, there’s a happy ending 🙂 This was originally posted on July 25th, 2016. 

We moved to a new community a couple of years ago and it was time for my three young children to see a dentist. We had no information to assess what dentist was the right one for our family. Who specialized with children? Who had years of experience in order to master their skills? Who had qualified assistants who performed the important cleanings and post care? Which dentist had their patient’s best interest in mind instead of lining their own pockets? But when I stepped through the front door, I knew I was in the right place. On the bulletin board in the waiting room were the hand-written words, “Love People. Use Money. Don’t Love Money and Use People.”

Five years ago we stepped into the new community of Congenital Heart Defects (CHD’s) when I was pregnant with our third child, John. He was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) and would need three open-heart surgeries within his first few years of life. The first, and most invasive, surgery would be needed within days of birth. The limited information parents have when researching a dentist is eerily similar to choosing a pediatric heart surgeon. But this was not a small cavity that needed to be filled.

Norwood

Finding this care was not easy. It’s a big decision left to chance because factual information is difficult to find and, if you’re like me, parents often don’t know who or what questions to ask. My conscience propels me to publicly explain the difficulties we had leading up to our son’s care decisions, in hopes of raising awareness as to what’s been termed as the “transparency issue” in the pediatric heart world.

DIAGNOSIS

I was around 22 weeks gestation when the ultrasound technician couldn’t find the left side of John’s heart. The left ventricle is responsible for pumping blood to the body. Hypoplasia means “under formation”. I wondered what I did to cause this severe heart defect. Was there a day I forgot to take my prenatal vitamins? My husband and I both shut down. We were hurting deeply and naturally concerned for our unborn child and the ramifications this would have on our marriage, other kids, finances, job, and all the responsibilities it takes to be a good parent to a child affected by CHD.

Family Reading

Together as a family, pregnant with baby John, HLHS

We had a hard time remembering what the acronym HLHS even stood for. It was all very overwhelming. The internet was our first teacher, but later, when we met with a perinatologist (a high risk OB physician), our suspicions were confirmed. We were completely unaware that there are hospitals willing to perform invasive, complex surgeries on fragile infants with limited experience or success.

DOCTOR APPOINTMENTS

The doctor, in his quiet voice, told us it was an especially bad case of HLHS because of John’s extremely small aorta. He said there was a chance we could lose the baby in utero. Twice, he brought up termination. Thinking back now, I find it illogical that presenting termination of our child as an option was legally required, but presenting transparent information about various pediatric heart centers and their outcomes, which can give heart kids a fighting chance at a qualitative life, was not.

So many questions were racing through our minds by the time we met with the pediatric cardiologist. We were eager to trust someone knowledgeable and get a feel for what life was going to look like for our family.

I was pregnant and tired when the cardiologist performed a thorough and exhaustive echocardiogram of all the tiny little valves, vessels, and arteries of John’s quarter-sized, two-chambered beating heart. Afterward, the cardiologist sat at eye level with us, showed us diagrams of the heart, and confidently began to explain the three open-heart surgeries that were needed to save John’s life. The cardiovascular system of our newborn baby’s heart needed to be completely reconfigured, including extensive reconstruction of his tiny aorta.

But a thick, confusing blanket of vagueness descended when I asked where we needed to go for these invasive surgeries. He shrugged his shoulders in response. I asked about heart kids I was following on social media and he told me their hearts were great, but it was the eating issues they struggled with. There was a negative connotation in his voice when he answered our questions about other hospitals in the area, suggesting that a teaching hospital would just have a lot of doctors running around, telling us what to do. His expectation was to stay local for the surgeries.

The cardiologist removed himself from the conversation. He never gave us any qualitative facts about statistics, credentials, or historical experience. There was no discussion about recovery and the complications that can easily arise after surgery. His indifference was hurtful and placed John in a dangerous position. Something inside me told me to protect my child from this practice.

Hands on Pregnant Belly

Therefore, we entered into our own research process completely blind and on our own. There was so much at stake and the pressure was emotionally exhausting.

FINDING THE RIGHT CARE

We had no idea where to start. On the internet I read dozens of blog posts, describing the daily ups and downs of post-surgery recoveries. Almost every writer was advertising whichever hospital or doctor they had become emotionally attached to. Hospital websites were filled with marketing techniques. The culmination of everything I was reading on-line only caused me to withdraw further.

Out of desperation, I called four different heart moms who all went to four separate heart centers and started to compare notes. My husband spoke with another heart dad that traveled a substantial distance for his child’s surgeries. We called a family practice doctor we knew, who talked to other doctors he trusted. Hard facts were nowhere to be found.

While searching for information, I attended a local support group meeting filled with some of the strongest mothers I have ever met. It was like a tidal wave of one horrific tragedy after another. Tangible information was hard to find, but thankfully there were whispers and private conversations. I ended up getting a name of a surgeon’s nurse who I could call for help.

After consulting with two different surgeons, both at their respective hospitals, we decided for John to receive care at a nationally ranked center of excellence. It was their seasoned experience, as a whole, that set them apart. As I type this, I’m fighting back tears of relief and joy, because there was a high likelihood that John would be dead or disabled had we not found our own way to this great hospital.

Docs Surrounding Bedside

Doctors and nurses surrounding John’s bedside after his 2nd OH surgery, the Glenn.

If you are a soon-to-be heart parent, your child is amazing and worth fighting for! When it’s your blue baby coming into this world, gasping for breath, and about to be placed on that operating table, you’re going to want to be at a hospital that’s not afraid to truthfully share their outcomes of whatever procedure your child needs. If you need help or guidance during your research process, you can use PCHA’s Guided Questions Tool for practical advice.

Transparency improves trust and is essential to improving quality and outcomes. Parents deserve to be properly and truthfully educated on their viable options of where to go for surgery and recovery. Choosing which hospital to go to for invasive surgeries can be the difference between life and death. It can be the difference between your child walking off the school bus to go to Kindergarten or spending the rest of his life in a wheelchair. And what we discovered is, finding a good surgeon isn’t enough. Infants and children recovering from open heart surgery need a supportive and organized system in place due to complicated recoveries. Thankfully, John was at a center that had specialized equipment and experienced cardiac sub-specialists readily available. He is one of the lucky ones. He is the real, beautiful, amazing little boy behind this transparency story.

Toddler Pic, looking down (1280x853)

John was a breastfeeding 9 month old when he crawled across the living room. He took his first steps at 14 months of age. And today he continues to develop normally, graduating from preschool, alongside peers his own age.

We vacationed over the 4th where he:

Jumping into lake

Jumped into the lake with his family and yelled, “CANNON BALL!”

Standing on Head

Stood on his head.

Climbing

Climbed the playground equipment.

Fishing

Learned how to fish.

Ice Cream

Ate Ice Cream.

Boating

And shouted from the hull of the boat, “To the beach, daddy, full speed ahead!”

And that’s exactly what he’s doing. He’s a precious little boy moving full speed ahead as he grows, develops, and begins to understand his important place in this world.


John

John turns 5 years old this month with a bright and promising future in front of him! He lives in West Des Moines, IA with his parents and two older siblings, Abigail and Caleb. He receives care at The University of Iowa Children’s Hospital in Iowa City, IA where he successfully underwent the Norwood, Glenn, and Fontan open-heart surgeries as well as an interventional cardiac catheterization where a permanent fenestration was inserted. He has dealt with complications including Chylothorax, NEC, Embolic Stroke, PLE, and Plastic Bronchitis. He sends out a huge thanks to all who have worked together to make his life what it is today.

Taking a Break for Fun: Summer Possibilities with Margaret King

This week we are continuing with the theme of summer fun! Today we’ll hear from Margaret King, a Heart Mom, who spends her summer hanging out with her fun-loving son.

 

In the CHD life, sometimes it’s hard to get a break. While summer brings a brief reprieve from school expectations and IEP goals, we CHD families have our own challenges: from trying to cram appointments and therapies into the months when our child is off school to watching some of our children struggle with the loss of their usual routines and social outlets, navigating new extracurriculars staffed by people unfamiliar with our child’s diagnosis, and dealing with hot weather and physical activities that can be too strenuous for our kids.

Yet, summer is a wonderful time to experience new places and try new things that can open the windows of self-discovery, create family memories that will last a lifetime, and even increase skills for self-advocacy. Families living with CHD deserve, and need, opportunities for fun, exercise, and release from stress and worry. While as a heart mom, I’ve fine-tuned our family’s version of “fun” over the years, I hope to instill in my own child that “fun” is the adventure itself, not just the destination.

Learning Your Limits While Being Limitless

Multnomah Falls in pouring rain–silly us, bringing only 1 umbrella to the Pacific Northwest!

As someone with chronic illnesses myself, I want to teach my child to respect how he is feeling physically and mentally, and to know when he is reaching his ‘max” for the day. Some days he can go almost nonstop for 3-4 hours, and other days, he might struggle to walk even a quarter of a mile, depending on weather, whether he has a cold, or just has been on the go too much. Honoring this has been great for his self-awareness and self-advocacy in other areas of life.

But we got to see this!

Sometimes, it also means going somewhere fun when we’re feeling good, even if it isn’t “perfect” weather outside. This has resulted in many of our most magical days, because we’re often among the only people crazy enough, for example,  to go the beach or Multnomah Falls in the pouring rain a couple weeks ago (and the only people crazy enough, apparently, to visit Oregon with only 1 umbrella for 3 people).

 

 

The ocean in the rain: maybe not perfect lighting for photos, but we had a blast.

“Off” Days Are Our “On” Days

We try to avoid going places during “peak season” due to hotter temperatures, longer lines, and crazier parking. Often going to a fun destination (like a water park or amusement park) very early or very late in the season is much quieter, cheaper, and all-around a lot less wear-and-tear. Last summer, instead of going to a bigger our out-of-state destination, we took a week off and visited several fun places within a 2-hour radius of our home…on the weekdays, when they would be less crowded.     

 

Reservations and Expectations Are Not Family Friends…But the Unplanned and Magical Are

Pre-paid tickets? Big expectations? These, at least for us, create a lot of pressure to get a certain level of experience out of what often turns out to be a major expense. Lowering the stakes allows us to be open to the unexpected, and results in a lot less guilt or disappointment if the weather is taking a lot out of my CHD child or one of us just isn’t feeling 100% that particular day.

This past winter, we drove from Milwaukee to Madison, WI to see the holiday lights at the zoo. We walked all over the zoo, saw all the animals, and got worn out before the lights even came on. Sure, we didn’t end up seeing the lights, but leaving through the back entrance, we saw the sun setting over a beautiful frozen lake, and joined the people playing on it. Honestly, playing on that frozen lake it something I’ll never forget–and was probably far more special to us than seeing the holiday lights, after all.

To quote the late, great Anthony Bourdain, “no reservations” has become my motto.

 

We didn’t see the holiday lights that night…but played on this frozen lake at sunset instead

Fun, Fun for Everyone

Summer fun will look different for each family, and for many of those living with CHD and other special needs, that is particularly true. But over the years, here a few tried and true summer options we’ve found:

  • Museum membership reciprocity: instead of buying several memberships to local attractions, we pick one different membership each year. Most museums, zoos, nature centers, and botanical gardens that sell tax-deductible memberships have reciprocity with other institutions, allowing us to visit several other educational sites per year with our membership–usually all for free. Some children’s museums also offer free tickets or memberships for families with special needs.
  • Nature: We’ve discovered many county, state, and even federal natural areas and historical sites that have free parking and free entry. Many nature centers and parks have short (1-mile or less) nature/interpretive trails that are flat, easy terrain and often wheelchair and stroller accessible.
  • Farms and farmer’s markets: Summer is the time to visit local farms that offer pick-your-own berries, peas, pears, and apples. We like these because you can go at your own pace, go early or late if it’s hot out, and of course, make delicious and healthy recipes when you get home. Local farmer’s markets are a great sensory experience for kids without being too overwhelming, and get us eating healthy in a season that’s ripe for indulgence!
  • When in doubt…water: Swimming pools and wading in lakes are, of course, kid favorites, but going ponding at your local nature center, visiting splash pads, or just running through the sprinkler are great ways to cool off. When it is too cold for swimming, we enjoy simply beach hunting at local lakes for “meditation rocks,” “worry stones,” and other treasures.

 

A heart-shaped piece of driftwood, a gift from Lake Michigan

  • Or animals: The healing power of animals can’t be overstated. Being out and about in summer gives us more opportunities to view animals in their natural habitats, as well as safely encounter them in educational and recreational settings.
  • Library programming: Summer reading programs promote reading for fun prizes, but many summer reading programs offer free events for children throughout the summer. From constructing marshmallow catapults to storytimes and magic shows, to kids’ concerts and reading to a service dog, my son has had some great experiences right at the local libraries.
  • Flower hunts: When my son was recovering from his 3rd heart surgery one summer, our activities at home were limited for several weeks, especially because there was a major heat wave occuring at the same time. That was when we started our summer tradition of walking around the block, going on “flower hunts” to see what was in bloom every few days. Sometimes, simple is best…but there’s nothing wrong with becoming acquainted with your local wildflowers and garden blooms, with their accompanying butterflies, caterpillars, and birds!  

 

Summer with CHD has its own considerations, but it’s also the perfect time to find out what you love to do as a family, try new things, and gain important insights and life skills. “Fun” doesn’t have to be a big production or involve “big ticket” attractions–though there’s nothing wrong with doing those once in awhile, too! We’ve found that simple spots are some of the most relaxing and beautiful–and easiest for us to adapt to, depending on our own needs.

 

 Margaret King is a Wisconsin writer who enjoys penning poetry, short stories, and young adult novels. In her spare time, she likes to haunt the shores of Lake Michigan, similar to many of her fictional characters. Her recent work has appeared in Unlost Journal, Verdancies, the Ginger Collect, Foxglove Journal, Moonchild Magazine, at art shows and in various other spots on the web. She was recently featured as Poetry Superhighway’s Poet of the Week, and is the author of the recently-published novella, Fire Under Water.

Summer Fun! – Laura’s Adventures with CHD at Camp Odayin

For the month of July, we are bringing you stories of how CHD families enjoy the summer, along with tips and tricks on how CHD patients can beat the heat. To kick us off for the month we have Laura Hoagland, an adult CHD patient and avid adventurer. Laura shares her experience with Camp Odayin, and explains why no matter how much you love adventures, the unknown can still be very scary for CHD families.  

 

To say I enjoy summer is an understatement. I LOVE summer! Growing up in the Pacific
Northwest summer was filled with family vacations to the coast, afternoons on the lake and
attending a local summer camp with school friends. As I got older, and especially throughout
college, I intentionally scheduled traveling into my summer
agenda; tours through Eastern Europe, roller coaster riding in
Disneyland, exploring Alaska, sky diving, road trips with college friends down the entire west coast, zip-lining down Whistler Mountain, bungee jumping and paragliding over the Teton Mountains after a day in Yellowstone. This summer, I’m exploring Sweden and Iceland. I’ve always had an adventurous spirit and summer is when my spirit can truly soar. In 2009, as I was finishing up my undergraduate degree in Special and Elementary Education, I quickly became nervous about my future. Not only was I about to leave the safety and predictability of being a student and enter “the real world,” but I was entering adulthood with CHD. My anxiety and nervousness led me to a quarter-life crisis! So I took my problems straight to Google! I began searching for support groups for young adults with CHD. I had met a handful of people with CHD before, but never had I met another person with Tricuspid Atresia, a single ventricle or the Fontan physiology. I felt like I needed a role model, a support group, someone to help guide me on my journey as adult with CHD. I felt alone and I wanted my hand held as I ventured into the unknown. What does adulthood with a CHD look like? My search turned up message board sites and some Facebook groups but I had no luck in finding an in-person
support group for adults. However, I did find summer camps for children with CHD.
Summer camp? Children? I LOVED summer camp when I was younger and as an aspiring
educator, working with kids seemed like summer fun to me! I found Camp Odayin in Minnesota. I was worried that the Midwest would be too hot and humid for my half heart, but after discovering that camp was on a lake and had air conditioned cabins I applied to be a counselor. That summer my adventurous spirit got on an airplane and flew to Minnesota, where I knew no one. As a volunteer camp counselor, I spent the week horseback riding, canoeing, swimming and becoming a human bowling ball down a slip n’ slide, all while wearing silly outfits. Oh, and I got eggs cracked over my head by campers!

As summer faded into fall my memories of camp continued to shine bright. After an exhausting
year as a first-year teacher, I was excited for summer break. I was mostly excited to venture the
1,500 miles and spend another week at Camp Odayin. Before I was to fly out for camp, I was in
Southern Oregon with my family. The week before this vacation I was taken to the ER because I
turned purple. While in Oregon my oxygen saturations dropped into the 70s. My parents,
veterans of traveling with a “high risk” CHD kiddo, kept calm and arranged portable oxygen for
the duration of our trip. I called my cardiologist and we scheduled an exploratory heart
catheterization once our vacation was over. Talk about a damper on summer fun.

Vacation was over. It was a Thursday and I was at Seattle Children’s Hospital about to have my
bajillionth heart catheterization, I’ve literally lost count. As I was walking myself into the
operating room, and began climbing up on the OR table, tears welled up in my eyes. I was 24
and scared. Six years before when I had a heart catheterization, it didn’t go as planned and
surgical intervention was required. This summer, I had plans, so things needed to go as
planned. My nurse looked at me and in a half-sarcastic tone asked, “Would a teddy bear make
you feel better?” I looked at her, tears rolling down my cheek and replied, “Yes. I know I’m 24
and I’ve done this before, but I’m scared of the unknown.” She came back with beautiful quilt
and I drifted off to the calm of anesthesia. When I woke up, my nurse looked down at me and
said, “You don’t need to be scared. You’re O.K.” In recovery, the doctors shared that there
appeared to be evidence of a small “shower” of pulmonary embolisms, and it was time to be
more aggressive with Warfarin. I was to spend the next several days recovering from the
procedure. I explained that on Saturday I had a plane to catch to Minnesota. He said no. I’m
stubborn. Two days after my heart catheterization, I got on that airplane. Some may think I was
running away from something, but in reality, I was running towards something.
My second summer at Camp Odayin changed my life. My recent “heart scare” gave me
perspective, a different view of camp and my role as a counselor. I had a camper so cyanotic
that she required 24/7 oxygen, and she rocked it with more grace and class than I could ever
imagine doing at 15. I had campers who showed off their scars
like badges of courage and honor at waterfront and when they
saw my scars they got excited that mine matched theirs. When I
told my campers and co-counselors that I couldn’t go horseback riding because my leg was still recovering from my heart catheterization, no one looked at me like I was “weak” or weird. They were just impressed that the night before I was piggybacking campers around the ball field. Growing up I was never bullied for having a heart defect, but I always had to explain myself. I had to explain why running was hard, why I needed an oxygen tank or why I had a scar down my chest. No, I wasn’t bullied, but I felt alone. This week, at camp, I didn’t feel alone. I felt like I belonged. I met several other counselors who were adults thriving with CHD. To this day I call them my heart family. The mission of Camp Odayin began to heal my heart that had been emotionally exposed in the OR. My spirit soared, because it was free. Free of explanation, free of judgement, free of worry.

I volunteered for three more summers before moving to Minnesota in 2013 and being offered a summer job on Camp Odayin leadership staff. Now I’m entering my 5 th summer as Summer Camp Co-Director. This isn’t an ordinary summer job, it’s a job full of summer fun! I get to kayak, ride pontoon boats with kids, sing songs, play games, go tubing behind speed boats, throw water balloons and roast marshmallows. At camp, I may act like a “big kid” but Camp Odayin is where I grew up. Ten years ago, I was scared to enter adulthood with CHD, I felt fear as the path of adulthood loomed in front of me…it looked dark, hollow and lonely.

When I first went to Camp Odayin I was struggling with my quarter-life crisis. I searched for people who could help me along the journey, to help me see the light within the tunnel of adulthood. When I left camp
that second summer, I left knowing what adulthood for a CHD looked like. It looked like me. I realized I am the light in the tunnel of adulthood. By living and continuing my journey, one day at a time, my experiences shine bright and illuminate the future, for my campers and other CHD survivors. Deep in my heart, where there was once a hollow, lonely feeling of fear and an emotional wound, there is now hope, joy and confidence. At Camp Odayin I have the most summer fun imaginable, a week to be the role model I once longed for. When I introduce myself to campers, I don’t tell them I have a congenital heart defect, I just introduce myself as Hoagie. My intention as Camp Co-Director is to be my most authentic self
and create a week where campers feel free to be themselves,
no explanation needed. If they notice my scar and bring it up,
I’ll share my heart story. If they just want to talk football, that’s
OK too. In the summer, we’re free to be and as we say each
night at Camp Odayin, “you can be happy if you let yourself be.”

 

 

Laura Hoagland was born with Tricuspid Atresia, Pulmonary Stenosis, VSD and and ASD. Laura has a single ventricle and had the Fontan procedure in 1991 at the age of six. If Laura is not at camp or in her classroom teaching you can find her adventure seeking and traveling. Laura lives by the motto, “half a heart, not half a life!”

 

Father’s Day – A Heart Dad How-To

For Heart Dads new to CHD,  feeling a little lost, or those not sure where they fit in the CHD world, Aaron Carpenter shares what he found, after 8 years on the CHD roller coaster, worked best for him and his family. His tips just might help you too!

I am the dad of two kids, one with complex CHD and one with minor CHD combined with a rare airway disease.  The kids like to say our family is 2 in 100, since every 1 in 100 babies are born with CHD.

Dads generally have two goals when it comes to their family – happiness and health. Heart dads are certainly in that group, but the process of obtaining and maintaining that second goal can be much more complicated.  CHD is your own, often unfair and definitely unwanted, version of normal.  You live by the calendar, whether it is doctor appointments, medication dosing, or interventions and surgeries. I like to say heart dads are regular dads with a lot more to remember.

The voices of heart dads are sort of quiet in the CHD community. If you’re anything like me, you’re an introvert who pays attention to data and isn’t so great with support groups or big picture ideas. I want to be just as involved and just as knowledgeable as the next heart parent, but how do I do that in the world of Facebook groups and blogs? It only took my wife and I eight years on the CHD rollercoaster to come up with a plan, a split of duties so to speak. We are both involved in ways that work to our strengths and preferences. Our sons see both of us doing work in the CHD sphere and we always come together as a family for local CHD activities.

Here are a few of the things I have found helpful along my heart dad journey, helping my kids to be happy and healthy, and somehow finding myself happy and healthy too:

 

Teach a new skill/game/trick

Teaching your kids new things is fun and exciting for them, but it also helps promote a strong bond and connection with you, which is far more important than the rules of any game. I still remember when each of my boys could dribble a basketball, hold scissors the correct way, and especially when they learned to swim. And we are working on shuffling a deck of cards now, along with reading Harry Potter.

 

Compare scars 

It’s important for your child to know that their scars don’t define who they are or who they will become, but it can also be something they have pride in.  Show off any scars you may have so they can see how their own scars might change over time.  When I was 12, I crashed my dirt bike and ended up with an emergency splenectomy and a scar the full length of my abdomen. This provided a great connection with my son after his first surgery and throughout his preschool-aged years.

 

Promote connections

Promote a connection to any other family members who have heart disease, even if it is long-distance. Find other heart kids/teens/young adults so they have role models for different stages of their lives.  Even though we know our kids are 1 in 100, at times they can surely feel like they are the only ones going through this. My father-in-law had open-heart surgery shortly after my youngest son’s Glenn surgery. It was very touching when he removed his shirt so that he could compare his scar to my son’s over video chat. Even though their grandparents live across the country, they are bonded through their hearts with Pops and through gardening with Mimi.

 

Manage medications

Know your child’s medications and dosing schedules inside out, backwards, and on little to no sleep.  Anytime there are changes to the medication schedule, be it sickness or higher doses as they grow, I build an Excel spreadsheet with the new dosing schedule.  It gets printed and taped to the kitchen counter so that I can mark off doses when given. My spreadsheet was super handy during the weeks following my son’s Fontan surgery when meds are given around the clock. Sure there are apps for this, but doing the spreadsheet was my way of being involved and connected.

 

Attend medical appointments

Attend every appointment that you can, no matter how routine it is or how quickly it goes. Each interaction with your child’s clinicians is an opportunity to advance your knowledge on how to best care for you child. I think we all worry about our CHD kids growing up and taking over their own care. Start young and show them what staying in care looks like, which means us dads need to go to our own doctors too!

 

Use your strengths

I am an analytical computer nerd with a passion for physics so I built the medication dosing spreadsheets and dove into the world of cardiology, until I learned everything that I could about my kids’ specific anatomy.  Everyone is talented or passionate about something.  The real trick is figuring out how to channel that energy into something that helps your family or the broader CHD community.

 

Have a strong partnership

This is probably one of the most important things heart dads can do.  The CHD journey is no joke, and having a solid relationship with your spouse, co-parent or significant other is crucial. Divorce rates among parents with medically-needy children are super high for many reasons, not the least is the incredible amount of stress. Whoever said that building a house together was a true test of a marriage, never had kids with CHD. Talk to your partner, listen to your partner, go to counseling separately or together if needed. You are a team.

 

Find other CHD dads

I have met a few other heart dads along this journey, from fatherhood veterans to fatherhood freshmen. There is a common bond between us because of CHD and no other dad has ever understood the gravity of seeing my son’s pink fingers and toes for the first time after Fontan surgery. Sometimes we don’t even talk about CHD or our kids but being together with those who truly get it is validating.

 

Take care of yourself

Let’s face it, the CHD journey is a marathon that never really ends.  If you don’t stop and decompress once in a while you are going to burn out.  Find a hobby. Exercise. See your doctor every year for a physical and actually tell them how you are doing (I am still working at this). Please, take it from my years of doing so, don’t compartmentalize everything until you explode.

 

Get involved with the CHD community

There are a lot of options once you are ready to take this step. Does your state have a PCHA chapter? Do other CHD organizations have a presence in your community? Do you have a skill you can lend to the broader CHD community? Will you send emails or make phone calls to your legislators, asking them to support key CHD measures? Can you visit Washington DC in February for lobby day? Do you want to just go bowling with other heart dads? Do it!

 

Heart dad is a designation that I doubt any of us asked for, but it is a badge we proudly wear. It says that we are fighting the CHD battle right alongside our kids, doing whatever it takes to keep them happy and healthy. Be proud of the work you are doing in your family. Tell people you are a heart dad, advanced dadding required.

 

Aaron Carpenter is the proud Heart Dad of two, a Software Engineer at University of Washington (Go Dawgs!), an alum of North Carolina State University (Go Wolfpack!), and master of the post-op medication spreadsheet. He routinely empties his vacation time bank at children’s hospital visits and enjoys running, hiking, and grilling up a good burger.

Aaron welcomes messages from Heart Dads and science enthusiasts everywhere at amcarp8@gmail.com.

Father’s Day – I See You, Heart Dad

Often times, Heart Dads do the behind the scenes work, the work that the world can’t see. Yet, in truth, their job as dad, their love, their encouragement  and concern doesn’t go unnoticed by the ones that matter. This week, Diana Schneider shares with us just how special a role her husband plays in their family and the life of their warrior, Danny. 

 

I see you, Heart Dad. You may not always wear your CHD heart on your sleeve, but I can see that too. I see the furrow in your brow as you’re researching our son’s diagnosis and treatment options. You wonder if you are doing enough to help him, if there’s more you could do for him. You try to imagine what the future holds for him and how you can make it better. I see you clench your jaw when the news anchor reports the latest flu statistics in our area and you glance anxiously at our boys, praying that somehow it spares everyone in our house. I see the tension in your shoulders when I need to take him to the emergency room. Again. You linger as you buckle him into his car seat, not wanting to let him go and yet wanting him to get there as quickly as possible at the same time. I know when I see you again there will be dark circles under your eyes because you can’t sleep well until he’s home safe with you again. Even with your anxieties and fears and without much sleep, you will be up the next morning to feed and dress our other two sons and take them to school and daycare. You will be mom and dad to them until Danny and I come back home, and I love that I never have to worry about them because it’s a job you do so well.

I see you swallow your concerns and let Danny be like every other little boy his age, running, climbing, and jumping off everything in sight. You roughhouse with him and his brothers, you chase him and tickle him until he squeals, planting big dinosaur kisses ever so skillfully on his belly without disturbing his G-tube. You never tell him he can’t try something because of his heart. And you don’t use it as an excuse to spoil him either. I see you discipline him and hold him to the same standards of behavior we set for his brothers when it would be much easier to let pity and guilt over everything he’s gone through get the best of you. But you know you wouldn’t be doing him any favors in the long run.

I feel like the people who know the story of our son’s journey don’t always see or appreciate how much of his success is from you. When our friends and family ask how Danny is doing you tell them I take him to weekly appointments with the feeding specialist and how he ate his first slice of pizza. But you don’t tell them you made the pizza from scratch (thin crust, so it’s easier to chew) and let him help you make it so he could experience food as a fun, not just therapy. You tell them I take him to see a speech therapist every week to get his language development on track so he can start school next year. But you don’t tell them how many books you read to him or how many flashcards you practice together each day when you get home from work. You tell them he no longer has a gross motor delay and doesn’t see a physical therapist any more, but you don’t tell them you built him his own platform swing to work on his balance at home. You tell them about current CHD research and what it could mean for Danny, but you don’t tell anyone that you went to our nation’s capital to educate legislators and push for more research funding.

I see the way becoming a Heart Dad has molded you into an even more remarkable father than you already were. It’s made you someone I could never have imagined when we were dating in high school, and your biggest concern in life was how to start a food fight without getting suspended. As it turns out, you weren’t very good at that. But you are the most incredible Heart Dad. It has shaken you to the core, and you have put the pieces back together even better than they were before. It has made you more vulnerable, but stronger. It has made you more serious, but you’ve retained your sense of humor. You live your life differently now, taking little for granted and stopping to enjoy the small things. You plan for the future, but cherish each day knowing that tomorrow isn’t guaranteed. I’ve watched the man who can fix anything around the house struggle to accept he can’t fix his son’s heart, but instead of buckling under the stress and fear you’ve allowed it to shape you into a better husband and father than you already were. You’ve managed to find a way to thrive under the burden of being a Heart Dad and because of that, because of you, Danny is thriving too.

Thank you for appreciating how hard I work to take care of our children. But the next time someone asks how Danny is doing, I hope you will remember to take your credit where it is due. To you and all the wonderful Heart Dads out there, have a Happy Father’s Day knowing how much we love and appreciate you the other 364 days of the year as well.

 

Diana Schneider is the lucky wife of an amazing Heart Dad and mom of three wild little boys. They live near Ann Arbor, Michigan and thankfully, Mott Children’s Hospital.

 

Father’s Day – Joe’s Dad

In May, PCHA honored Heart Moms for Mother’s Day. This month, we’re taking time to shine a light on the great Heart Dads out there, who conquer CHD along side us and are often unsung in the fight. This week, Joe Valente, an adult CHD patient, thanks his dad for the sacrifices he made a long the way and talks about why sometimes men seem to be in the background when it comes to  the CHD Family journey.

 

My father used to have a fond place for box kites and I remember many a summer being dragged across the windy beaches of Northern California by his kites.

As I sit hear with my next chapter in my CHD journey unfolding I am reminded of all that has been sacrificed to get me here and as Father’s Day is approaching it is hard to not think of all the CHD dads that make this world go around including my own. The world of Congenital Heart Disease is in a rapid state of flux. Since the day I was born over 36 years ago survival rates for critical congenital heart defects have improved beyond belief, but maybe more importantly the community of patients and parents that are able to connect through the internet and organizations like the PCHA have drastically changed the knowledge and support for everyone affected by CHD.

Being a male in the CHD world is difficult, there are not many emotional resources for the men that need support, the fathers who are helping their child fight, or those that are grieving a loss. Maybe it is our own doing and what society expects from us, but it is often a lonely road to walk. I enjoy seeing the fathers that are public about their battles and the men that share their journey with CHD with the world. So, while so much has changed the men are often stuck in yesteryear as they are expected to be strong through all else and have little escape or resources to coupe with daily struggles that accompany CHD.

As I was going through some childhood belongings the other day I found an old guide to CHD from the American Heart Association, copyrighted 1978. It is quite an enlightenment to read, as it was the only real resource that my parents had outside of the hospital. In this information era it feels like reading a tri-fold brochure when you want an encyclopedia. It is a good reminder for all of us fighting for more to not forget to be thankful of how far we have come.

As most fathers mine was observing my birth but for him it was in the same hospital that he had already delivered so many babies as an OBGYN. So, when I was delivered and was extremely cyanotic I wonder at what point he really knew. I know my mother tells the story of the pediatrician telling her I was being transported to UCSF and to call the priest. But I know my father knew before that—maybe from the moment he saw me—or was he blinded by a fathers love like so many parents who don’t see what may appear as obvious looking back?

I was blessed that my father was one of my biggest advocates when I was young, being a doctor he was knowledgeable enough to know when things were not right. I can say without hesitation that he saved my life. I know his grief was significant as anyone that was there would tell you he could barely walk into the hospital to find me after my transport. And when I was not on the floor they thought they assumed the worst. Like so many father’s I am not sure who was there for him, of course my mother and family, but who was his strength? Maybe all he needed for his strength was me to be there and to keep fighting.

My dad never let his medical knowledge and any fear of looking like a dumb parent get in the way of following his gut. When I was 9 months old one week after getting a the “see you in a few months” clearance from cardiology I began to go downhill. My father new something wasn’t right and immediately called my cardiologist. As my pediatric cardiologist still does, and I believe any good doctor should, he listened to him told them to come down as soon as they could. Upon setting eyes on me my cardiologist turned pale. He had never seen a baby decline so fast, he had only seen me a week before and I was “healthy.”

My father didn’t stop there when the surgeon came and gave the consult on a Friday afternoon and told my parents he would operate on Monday my father told him I didn’t have until Monday. The surgeon was adamant that I would be fine and that when he got back from his weekend vacation he would do the surgery. That wasn’t good enough, so my dad kept pushing finally he agreed to operate same day. After the surgery, the surgeon came out of the operating asking my father how he knew, he questioned how many hours I had left, not days, as I had formed an aneurysm in my trans annular patch that was placed when I was just 2 days old, and it was about to rupture.

As I have grown into a man, I think of all the nights my father was out delivering babies and how at 76 he still works 4-5 days a week. Not much has changed in my 36 years, except now I am the one in charge of my care. The lessons my parents taught me are what has led to me to search for a life of meaning. Not only for me but for everyone I love. I have had many moments in my life when I was required to trust my gut, and I have never seconded guessed it, because I learned at a young age the significance of doing so. I will always appreciate the medical professionals who take a pause and listen when I say something isn’t right.

I know that fathers may often seem hidden in the world of chronic illness and CHD, but it is not representative of their role. Many are at home and work, keeping the rest of the world moving while we fight our battles in hospitals and doctor offices. Many are out there advocating for us. They may not be the faces on our Facebook pages, but we know what they do and have done for us, and we are forever grateful. Maybe one day it will be the posh thing for dads to wear their emotions on their sleeve for the world to see, but until that day we must not forget of everything they contribute to us and our families. Regardless of their fame or the lack thereof we know their love is unwavering.

So, when I say:

The twine on your kite is as long as you want it to be. Always set it loose and reach for the blue skies. Let it fly high in the wind. If a breeze catches you let it pull you to where you were meant to be. Never give up on life. Fly free and you will be amazed at what you can be.

I think of my father and being pulled across the beach as I look up for all that can be. A happy Father’s Day to my dad and all the CHD dads out there that mean so much to us and our families.

 

Joe was born with Tetralogy of Fallot. He required his first open heart surgery at 54 hours old and suffered a stroke after surgery. He has now had four open heart surgeries, the last two days before his 30th birthday. He has struggled with PTSD for most of his life and believes a strong mind and building a team with a roster full of supporters is the key to successfully living with a chronic illness. He is a Board Certified Patient Advocate for families, children, and adults with congenital heart disease—helping them to navigate the emotions, diagnoses, and challenges they face in finding and understanding appropriate CHD care.