Teen Topics – The Top 10 Things to Remember

It often seems that the “taboo topics” in life aren’t really all that relevant until your teen years. 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. This post was originally published in November 2017.

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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.

 

CHD and the Taboo Q&A: Your Questions Answered

 

Today we revisit a couple of Q&A videos that were originally posted in October of 2017. The first video is an interview with Dr. Madsen, on alcohol and drugs. And the second video is an interview with Dr. Gurvitz on college, tattoos, and contraception. 

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.

 

 

 

 

 

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

 

School Intervention Series: Making A Difference

In the last week in our series on how CHD affects us at school and work, we hear from Kyle Herma, a School Intervention Specialist at Children’s Hospital of Wisconsin. Although this blog was originally posted in the summer of 2017, these tips, tricks, and recommendations for navigating a school’s system as a person who is affected by CHD, is still applicable today. 

 

Twenty nine years ago my sister was born with Hypoplastic Left Heart Syndrome (HLHS), a congenital heart defect that left a chamber of her heart severely underdeveloped at birth. This was at a time when medical technology and surgical repairs options were very limited for a complex baby like my sister. While she ended up losing her battle with HLHS, her short time on Earth ultimately began a battle much greater – the fight to eradicate congenital heart defects completely and in the process, improve medical outcomes and quality of life for those currently affected. Today, the Herma Heart Center (HHC) at Children’s Hospital of Wisconsin is known for having the best published survival rates of HLHS in the world. However, a top recognition like this is not achieved without constant work towards excellence and innovation in all areas of care.

 

Herma Heart Center

How does this relate to PCHA’s “Back-to-School” theme this month? It does on so many levels! Two years ago I was a kindergarten teacher, loving every minute of every day guiding 4 and 5-year-old kids as they discovered their world. I worked in the inner city of Milwaukee at a low-income Charter School – all of my students considered “at-risk” due to a variety of different statistics. Every day I sought to plan lessons that not only were rich in academic content and student engagement, but also focused on building a classroom culture of strong future leaders and community advocates. While I had always been involved with the Herma Heart Center on various levels because of my family’s deep connection, I was a teacher. I loved being a teacher.

In 2015, I got a call. The Cardiac Neurodevelopmental Follow-Up Program, one of the HHC’s leading whole-child focused programs, was expanding and looking to hire a School Intervention Specialist after they noticed a very high need for multifaceted school intervention in students with complex health needs – specifically in the area of pediatric cardiac neurodevelopment. The job requirements outlined a liaison-type service, with the goal of working to ensure clear and consistent communication between the medical staff, the family, and the child’s school at all times. I began researching far and wide. I wanted to learn everything I could about how CHD affects a child’s neurodevelopmental functioning and what type of supports schools have in place to modify for or accommodate these children. All of my searches came up empty! There was nothing. While significant literary research supported that children with complex health needs and chronic illness are at a greater risk of reduced student engagement, higher disruptive behavior, lower academic achievement, an increased exposure to bullying (among many other well-documented negative educational outcomes), structured programs for school re-entry and intervention are rare. In this moment I knew that I needed to step in to fill a role much larger than a classroom teacher.

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The School Intervention Program officially “went live” in February 2015. I began with a very focused population of heart transplant patients that pinpointed those re-integrating into school post-transplant, but also offered intervention services to all of our heart transplant patients no matter how many years post-transplant they were. The response was huge. My patient population quickly grew to all heart transplant patients (including those wait-listed for transplant) and several patients with advanced heart failure who were anticipating a future transplant. My pilot study served 55 cardiac patients, ages 3 (preschool) to 24 (college). The schools’ concerns that were addressed included: attendance and absence support, special education support, attention and behavior plans, and documentation/medical record communication – just to name a few of the big categories. Of those 55 patients, 57% have exited the program with their school concern fully resolved, 36% still receive ongoing school intervention but are making great progress towards their school goals, and 7% transitioned to different medical centers where school intervention could no longer be followed. I’ve witnessed one of my high school student graduate with his class just 5 months post-transplant, I’ve heard from a school nurse that she could not believe a student is finally getting to live a “normal” life without any medical interventions needed during the school day, and I’ve helped a mom send her 7 year old to school for the first time because she finally felt confident the school could handle his needs.

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You may be thinking, “That’s great, but my child did not have a transplant. This doesn’t help us.” I am hear to tell you that it does! By doing a formal pilot study on a small population of patients and proving there is an urgent need for formalized school support, I am establishing both attractive outcomes data and the sustainability of this type of position. I frequently share these outcomes with colleagues, speak about my work at a director and leadership level, and even present at international conferences just so people can see how this seemingly non-medical work is directly related to improved medical outcomes. And guess what? People ARE listening.

 

Herma_Kyle

I am excited to be sharing with you over the next couple weeks to help bridge the very different worlds of medicine and education to ensure that children with complex health needs, specifically CHD, are not falling though the gaps. Here’s to a great school year!

 

Kyle Herma is the School Intervention Specialist serving the Herma Heart Center at Children’s Hospital of Wisconsin. Kyle has been at Children’s since February 2015 conducting a formal pilot study on school intervention and the impact it has on a child’s overall medical outcome and quality of life. Prior to this position, Kyle was a teacher at Milwaukee College Prep’s 38th street campus. In both roles, Kyle has shown her dedication to serving children who are placed at-risk for school failure and ultimate mission to achieve equal access to quality education for all.

Back to School Q&A Panel

This week, we are continuing to learn about how CHD affects people in their work, or at school. This is an interview that was conducted back in August 2017, but is still relevant to our topic today. 

 

Congratulations on the start of a new school year! Please introduce yourself. What grade will you or your child be entering?

Frances: My name is Frances and I volunteer as the blog coordinator for PCHA. My husband and I live in California and have a confidant and outgoing 3-year old daughter who was born with severe mitral valve prolapse and a VSD. She had a very successful open heart surgery at 8 months old. She’ll be starting a couple mornings of preschool this year.

Margaret: Hi! My name is Margaret and I’m a heart mom to an awesome 8-year old heart hero named Kieran who will be starting 2nd grade. We’ve been through Birth to 3, as well as the IEP and 504 Plan process. I am also a parent adviser to our local hospital’s School Intervention Program.

Jack: Hello, my name is Jack Radandt and I was born April 15th, 2001, with Hypoplastic Left Heart Syndrome (HLHS). I had three open heart surgeries by the age of three, Norwood, Glenn, and Fontan. I lived a pretty normal life after my Fontan surgery. I was able to attend school, and even keep up with the other kids my age. At age eleven I experienced heart failure. I went to Children’s Hospital of Wisconsin in Milwaukee and was placed on the transplant list in October of 2012. I then needed to be on a device to bridge me to transplant. In December of 2012, I had surgery for a device called Heartware Ventricular Assist Device or (HVAD). I was the first single ventricle child in the United States to have the device and second in the world. I was also the first single ventricle child in the world to go home on this device. I had the HVAD for five months, until I received a heart transplant on May 20th, 2013.

What are you or is your child looking forward to most this school year?

Jack: I am looking forward to all the speaking events that I was able to get this school year.

Margaret: Kieran says, “gym!”

Frances: Making new friends. She has the ability to make a friend wherever we go, even when we run errands!

Do you notify your or your child’s school or teacher about your or your child’s heart condition? If so, how do you go about doing so?

Margaret: We definitely do. I’ve learned that teachers and school staff really appreciate being informed. Not every CHD student will need an IEP or a 504 plan, but we have both. Each teacher gets documentation about his HLHS, health, and classroom needs. Each year, I’ve met with school staff before school starts to make sure we’re all on the same page and to answer any questions. He has an excellent team at school that is communicative and proactive. We don’t just think about the regular classroom teacher — it is important to have a plan in place so that the school nurse, office staff, lunch and recess supervisors, gym teacher, substitute teachers, and any other school professional who might work with Kieran be informed of his health plan.

Jack: I do notify my school’s faculty, staff, and students of my condition, and I am very open about my scar and surgeries.

Frances: When filling out her general medical information for the preschool, we noted her cardiologist in addition to her pediatrician. She also has a medical device identification card for her annuloplasty ring in case any emergency arises affecting her heart. While our daughter has zero restrictions and no known issues otherwise, we included a copy of this card for the preschool and let the director know about it as a precaution.

Do you or your child have any limitations or require medication during school? If so, how do you handle this?

Margaret: Kieran has HLHS, and his cardiologist has requested that he stay indoors when it is below freezing. On these days, he gets to pick a classmate to stay inside and play board games with. He also has an adaptive PhyEd teacher working with him in gym class. He has a water bottle with him all day to prevent dehydration. For fire drills, he has instructions in his health plan to be allowed to wear a coat outside if it’s cold out. There are certain things we take on a case-by-case basis, such as field trips and walking trips.

Frances: Our daughter doesn’t have any limitations or medications, though the future is uncertain. Her heart will need to be monitored more closely during puberty as her device may be affected during this exponential growth period.

Jack: I don’t have to deal with this because I take my medication right before I go to school and right before I go to bed.

What reaction do you get from the staff if you notify them? Do you feel this affects how the teacher and/or staff interacts with you or your child?

Frances: They thanked me for sharing the information. They haven’t mentioned it otherwise, and from what I’ve seen do not give her any special treatment.

Margaret: We’re fortunate to have a neighborhood school that fosters a very positive learning environment for everyone, and is innovative about classroom adaptations. When we’ve notified them, they’ve responded very positively with a can-do attitude. Last year at our back-to-school meeting, not only did Kieran’s new teacher attended, but the office staff, principal, school nurse, and almost everyone involved with his IEP. Shedding light on the HLHS and the secondary challenges we’ve faced helps them understand how to meet Kieran’s needs better, as well as helps them understand why he (and we as parents) sometimes act the way we do.

Jack: Some of the faculty and staff that find out about my condition feel very uncomfortable about the whole situation.

How open are you or is your child about CHD with peers at school? How does this affect your or your child’s relationships?

Jack: I am very open about my condition. This is my life and I’m not ashamed of it at all.

Frances: Since she’s still very young, our daughter doesn’t make a point to either hide or reveal it. While I want her to be proud of her scar, I also want to allow her to talk about CHD on her own terms whether that’s mentioning it to close friends or being a vocal advocate. She is a naturally confidant and extroverted individual, so it doesn’t seem to bother her when someone points it out or asks. For now we focus on making sure she knows her scar is something good and how to respond in situations. I don’t make any consideration with clothing when it comes to her scar, choosing her outfits based on the weather and her own personal preferences.

Margaret: Kieran is very sensitive about his heart condition. We don’t actively keep it a secret, but we don’t actively volunteer information about it to his peers, either. He feels very strongly that he is a “normal” child and wants to be seen that way. Everyone is different, and I know many heart parents who believe it’s important for their child to be CHD advocates, but I feel it’s important for now for him to feel comfortable at school and have it be a “safe space” for him to feel normal. He sometimes does participate in CHD activities with me outside of school, but he doesn’t understand why they’re important. He sees his “heart friends” as regular friends. Many heart kids don’t truly know the gravity of some of their heart defects until they are much older. A cause that affects him much more, and has for years, is hunger and his desire to see everyone in the world have enough food to eat. I think that’s wonderful. We should all be able to focus on areas of need that spark our sense of fairness.

What is your or your child’s favorite subject or activity?

Frances: She loves the arts – dancing, painting and music.

Jack: My favorite subject in school is biology.

Margaret: Definitely gym. He also likes math and music.

What, if any, concerns do you or your child have in regards to CHD for the school year?

Margaret: My biggest concern is that somewhere, at some point, there might be a breakdown in coordination at school. I worry most when there is a substitute teacher in the classroom, because I’m not informed of it, and I have no idea if they’ve read his 504 plan and understand it. Luckily, he comes into contact with many staff throughout the school day, and I think they all do a good job keeping an eye on him and all the students. Sometimes, because he wants to be seen as “normal” in front of his peers, he’s not as assertive as he should be. I also worry about rough play during recess. This has been a problem at times throughout the past school years, where he will be tackled or otherwise roughed up during normal play, which has resulted in some bruising because he is on blood thinners.

Frances: You would have no idea our daughter has CHD besides her scar, so my only concern is her peers setting her apart in a negative way because of it. Her preschool focuses very much on emotional competence and socialization in a play based setting, and what we liked most about it when touring was how respectful every child was to each other regardless of their differences.

Jack: I am in a very small school so I really have no concerns besides being ill.

If you or your child has a high sensitivity to illness due to CHD, how do you or your child combat this at school?

Frances: While she doesn’t have a high sensitivity, her pediatrician still errs on the side of caution by making sure she gets the first flu vaccination that comes in for the season which we are thankful for. We also chose a preschool with a smaller class size and a strong emphasis on cleanliness.

Jack: I am sick a lot so missing school is always a big concern.

Margaret: The school nurse, or sometimes the classroom teacher, is really great about informing us about illness at school. They will email us personally if a lot of kids are out sick, or with certain communicable illnesses requiring all parents at school to be notified, the school nurse sends home flyers. We are most concerned about things like strep and seasonal flu. If it’s an outbreak the classroom, we would most likely keep him home until it had passed. We use hand sanitizer, get a flu shot, and try to get enough sleep and eat healthy. We emphasize to Kieran the importance of good hygiene. His school has a great custodian and they are good about keeping the classroom and school wiped down.

What is your biggest hope for yourself or your child this school year?

Jack: To remain on honor role and avoid illnesses.

Margaret: That he will make more friends and feel more included socially. Not only is he an only child, but like many CHD kids, especially those with critical heart defects, he is a bit behind for his age socially. Add to that the fact that he easily tires during playground games and has to take breaks during physical activities, he sometimes feels frustrated that he can’t keep up with other kids, especially most of the boys. Of course, I also hope he has a great learning experience this year and finds areas of learning he really loves.

Frances: I hope she will be able to make new friendships and start a solid foundation of a love for learning!

What area(s) is your child most successful at school?

Frances: Since day one, my husband and I have never experienced separation issues with her. She’s very adaptable, confidant and according to her preschool teacher, not at all afraid to ask questions.

Margaret: He a wonderful singer, and is also very creative when it comes to visual art. Last year, he did after school Spanish and book club, which was good for him. He is successful at reading, although he pretends to think it’s “boring.”

Jack: Science class over any other classes.

Thank you all for joining us this past month thoughout the Back to School Series, and best wishes for the new school year! 

Over the Counter Medications

As patients with pre-existing conditions, who may be on a list of prescription medications, it’s important to know which over-the-counter (OTC) medications are safe for CHD patients  Recently at an Adult Congenital Heart Disease Conference, Justina Damiani, Inpatient Cardiology Pharmacist at Lurie Children’s, shared her recommendations for OTC meds, for those everyday illnesses or aches and pains.
*Please be sure to also consult your own doctor and pharmacist before starting or ending any medication.

General OTC Medication Tips

Always look at the active ingredient.
  –  Some brand name products may contain medications that are harmful.
  – Also, watch out for multi-ingredient preparations. Many cough/cold medications contain pseudoephedrine or phenylephrine which, are not recommended.
  – Avoid medications with a “D” at the end of the name.
Always check the appropriate dose
Always check the maximum daily dosage

 

 

OTC Cough and Cold Products

Pseudoephedrine:

Similar to phenylephrine, pseudoephedrine is also commonly used to treat nasal congestion. These products are stored behind the counter at your local pharmacy and require an ID for purchase. If pseudoephedrine is in a combination product it is usually identified as the “D,” for example Mucinex D ® or Claritin D®. The reason the we recommend to avoid use is that pseudoephedrine commonly causes increases in blood pressure, heart palpitations, increases in heart rate and potentially cardiac arrhythmias.

Phenylephrine:

Phenylephrine is commonly used to treat nasal congestion during the common cold. This can be purchased as a single ingredient product or in combination with other medications. If it is a combination product there is usually a “PE” on the label. While this is very effective in treating nasal congestion, it also can cause unsafe increases in blood pressure. Although rare, it can also worsen heart failure or induce cardiac arrhythmias.

 

Ibuprofen (Motrin)/Naproxen (Naprosyn):

Ibuprofen can be safe to use in certain people. Definitely talk to your provider if you are interested in using this for yourself, or your patient. Ibuprofen is often used for pain control and to treat fevers. This drug can be very helpful for both of those indications. The reason it can be considered unsafe is that it can hurt the kidneys. This is more of a concern in patients who already have underlying kidney issues.  This medication is commonly used in patients with cardiac disease unless you have baseline kidney issues or you were told to avoid it by your doctor.

 

 

Heart Safe Cold/Flu Products

 

Coricidin HBP (High Blood Pressure) is recommended for anyone greater than 12 years old.

 

 

 

 

 

The below chart lists the Coricidin HBP products available for  various Cold and Flu symptoms, as well as products suitable for day or nighttime.

 

 

Often, heart patients experience symptoms outside of cold and flu, such as gastrointestinal irritation. Below are some tips on OTC medications for these issues.

 

OTC GI Medications

• Abdominal bloating/gas
– Simethicone
• Constipation
– Miralax
– Senna
– Docusate
– Bisacodyl
• Nausea
– Calcium carbonate (Tums)
– Do not use Pepto-Bismol or any product with bismuth subsalicylate

 

Herbal Products

Another option to give careful consideration is the use of Herbal products. While the category name may sound safe, the product may not always be so.

• What supplements or herbal products should I avoid?
– List may change based on daily prescribed medications
– Ask your physician/advanced nurse practitioner/pharmacist before
starting any herbal products or supplements

 

Medication Optimization Tips

Get to know your pharmacist!
– Is there a local pharmacy that has “down” time or a counseling room?
– Do not be afraid to ask them questions
Use the same pharmacy to fill all your medications
– Occasionally a specialty pharmacy will need to be used
Request refills for prescriptions about 7 days in advance
Remember the new year
– Insurances often change
– Co-pays renew in January
Can you get a 3 month supply near the end of December?
– Prior authorizations may need to be renewed around this time!
Medication storage
– Keep away from direct heat or humidity
• Store OUTSIDE of bathroom
• Away from direct sunlight
– Avoid extreme cold temperatures
– Store in an easy to remember location
– Store medications away from children – locked up?
• Remembering to take your medications
– Take medications same time everyday
– Use pill boxes
– Use an APP on your phone
Medisafe – Pill & Med Reminder
CareZone – App

 

Additional Notes: Tips in case of Medication Changes by Other Providers: 

Keep an updated medication list with you at all times
Ask your pharmacist for counseling on all new medications
Ask your pharmacist to verify or double check your medications if
they look different when you pick them up
Call physician/advanced nurse practitioner for any changes in
cardiac medications by outside providers

 

Final Thoughts

Try to use single-ingredient over-the-counter products
– Ask about proper dose, including maximum dose per day allowed
Ask your pharmacist/physician/nurse practitioner about any new
herbal products
Use medication reminders for taking and reordering
Know when to call physician/nurse practitioners
Get to know your pharmacist!

 

Recommendations courtesy of : Justina Damiani, PharmD, BCPS

Justina Damiani is a clinical pharmacist at Lurie Children’s Hospital and primarily works in the cardiac intensive care unit. She received her PharmD from Purdue University. She completed two years of residency, the first at the University of Georgia followed by a pediatric pharmacy residency the University of Michigan. She enjoys running, yoga, and spending time in warm weather.

 

 

 

 

30 Days of A Grieving Mother

Losing a child is a trial like no other. There is no one set way to grieve. There is no one way to carry on. In this special post, Heather Speakman, shares part of her family’s journey after the loss of her daughter, Madison.

 

If you’re here for sunshine and rainbows, I hate to break it to you, but you’re in the wrong place, for today’s blog anyway. I’ve always felt compelled to be completely honest about Madison’s journey – the good, the bad, the ugly  – so naturally this will be no different.

I’ve heard people talk about the “fog” that comes with losing a child. What they don’t tell you is that the fog comes and goes, or at least in my experience anyway. Sometimes, I feel like I need to be pulled back to Earth.

Erik and I were driving back to Ronald McDonald, after we said goodbye to Madison, and we cried the whole way there. I remember being in a state of total shock, denial, and panic all at once. I couldn’t believe my baby was gone, she’s not coming back, and my mind was running a million miles a minute. I started thinking of all the things I would never get to see her do, milestones that I was robbed of. I’ll never get to use those baby clothes and blankets everyone sent, I’ll never hear her brother and sisters yell her name, I’ll never get to see her grow up, I’ll never see Erik walk her down the aisle. I will forever have a emptiness that only she could fill. It was so surreal. I was having an out of body experience, there was no way this could be my life. I didn’t want to accept it.

The first 48 hours were hard. My in-laws brought Gage and Hayden up, and I was in for a rude awakening. I didn’t realize how long it had been since I had to function outside of the hospital, let alone be a mother of three kids again. We went to the Cheesecake Factory, and it was so loud. There were people all over the place. It was weird! For six weeks straight, I would sit in her quiet hospital room, with little to no noise. Sure we would laugh and get crazy, but you don’t realize how quiet it is until you’re out there trying to function on a Saturday night. We had to wait to get a table, so we spent some time walking around in the mall. I went to Children’s Place to get Hayden a dress for Madison’s funeral and lost it in the baby section. I couldn’t look at the tiny socks and cute outfits. Then Hayden helped me snap out of it, because she was walking around like she owned the place, grabbing everything in sight saying, “I NNNEEEEEDDD IT MOM!” Oy vay this girl! I also didn’t realize how much time I spent by myself. I couldn’t tell you how many times I walked off by myself, leaving Erik to wrangle the kids. I would quickly realize, and say, “Oh sorry babe, I’m coming!”

I was trying so hard to be “normal” Heather, and I realized that NOTHING about this is normal.  So I said to myself, “You act how you want to act and feel what you want to feel. The people who love you will understand and be there for you, whatever that may look like, they will be there. Anyone else that doesn’t like it can go fly a kite.”(That’s the PG-13 version). I’m fortunate enough to have a whole gaggle of people who get me, and that is NOT an easy task. Sometimes all I have to say is that I’m having a “Madi day” and they understand. Shot out to the people who would let me snap and not hold it against me, y’all are the real MVP’s.

There are days when I feel like my heart is going to explode, and I cry until I can’t catch my breath. There are days when I miss her so much I want to scream. Sometimes, I don’t want to function, but I do it for my living children, even though I feel like I’m failing them the most. There have been times where I see someone with their judgy eyes and think to myself, “say something, PLEASE! I would love to give you a piece of my mind, let you know that you have NO IDEA what I’m going through.”  I’d love to tell that that I may look like a “normal” person, but it’s taking everything I have to not fall into a puddle on the floor.

There are days I want to tell the world about my amazing daughter, shout it from the rooftops that she was a fighter, that she made people believe that anything is possible. I want a shirt that says, “I have a daughter, she had a heart defect, she was only 6 weeks old, I miss her.” Maybe then I would have a reason to bring her up in every conversation I have. You know I’m desperate when I tell bill collectors about her.

There are also days where I feel like people don’t have the privilege of knowing about her, if that makes any sense. It really depends on my mood and if I think they can take it or not. For example, I’ve been apartment hunting, and the question “What brings you to Colorado” always comes up. If you’re being a jerk, I tell you that my husband got a better job here. If you’re super sweet and I don’t think you’ll cry harder than me, I’ll tell you that I had a heart warrior and she’s not with us anymore. It’s one of my weird “things” I guess.

In the midst of the really ugly, hard days I also see a different beauty I never would have known. A friend of mine told me that I would love harder and more, man was she right. I loved kids before Madi, but I often find myself staring at kids and how cute they are, hopefully their parents don’t think I’m being weird. I want to squeeze all the babies, I mean every single one! I see my friends with their little ones and know that Madi is looking over them. I’ll forever spend my life on a different level, with a piece of my heart in heaven. I have a bigger level of empathy, and I thought I was pretty empathetic before. I see a waitress struggling to remember an order and give her a bigger tip, write a note on our check to tell her about Madi. It’s my way of telling people about her without saying too much. We went to eat one day, and I paid for two guys’ food, told them about Madi and said it was from her. They hugged me, and said they would be praying for us.

Having our other children around make everything better. I don’t think I would take a shower some days, if it weren’t for them. Tristyn is a typical teenager, doesn’t say much but will give me a look, and I know that she’s missing her. My heart breaks for Gage the most, my sweet innocent little boy doesn’t understand that sister isn’t coming home. The day he came up from Albuquerque, he mentioned buying a present for Madison, and Erik and I lost it. We explained to him that Madison wasn’t coming home and that she went to heaven with everyone else we loved. He ran away, cried, and hid underneath the covers, I knew exactly how he felt. Before Christmas we would go to the store, and he would ask to buy her a present, oh man that wrecked me. He asked Erik one day if we were still going to have a Christmas, talk about gut wrenching. Hayden is 2 so she doesn’t really understand any of it. We talk about Madison, and she uses her blanket, always making sure I know that it’s “Madsun’s bankey” not hers.

Erik and I are irrevocably changed, as husband and wife, as mother and father, and as individuals. We’ve been together almost half our lives, and I think it’s fair to say that we’ve been through IT. Erik often jokes that our life could be a sad country song, hell at this point it’s a whole album. I thought that we were done with storms, but the truth is you’re never really done. There’s always going to be storms, it’s called life. All I care about is having a man by my side who isn’t afraid of weathering the storm with me, every single one. Erik is everything I need and more. I am so blessed to have someone to share my grief with, and we will get through this TOGETHER, like we always do.

There are times when I look up at the sky, smile ,and say, “I see you baby girl.” I know she’s everywhere, watching out for us. I miss her so much my chest physically hurts. I find a small comfort knowing that she has a whole bunch of people loving on her in heaven, but sometimes it isn’t enough. Sometimes even though you made the right choice it still isn’t enough. Even if you knew during pregnancy this was always going to be the end game it doesn’t make it easier.

All I can say is “I’ll love you forever, I’ll like you for always, as long as I’m living my baby you’ll be.”

 

 

Heather has been married to her high school sweetheart for 13 years. They have four kids Tristyn 13, Gage 5, Hayden 3 and Madison is their heart baby, who passed away at 41 days old. Since Madi died in November of 2017, Heather has dedicated her life to contributing to causes that helps families like hers, including PCHA,  and sharing Madi’s story any chance she gets.

Qualifying for Social Security Disability Benefits as an Adult with CHD

Qualifying for Social Security Disability Benefits as an Adult with CHD

 

Tens of thousands of adults are thriving with congenital heart defects. While many are able to live full lives, it’s possible that at some point your heart function will decrease and you’re unable to maintain employment. If you’re no longer able to work due to your heart condition, you may be eligible for Social Security disability benefits. The Social Security Administration (SSA) offers monthly resources for people who cannot work. While a CHD does not automatically qualify, thousands of adults may be eligible.

 

Medical Eligibility for Social Security

 

The SSA uses its own medical guide, known colloquially as the Blue Book, when determining whether an applicant will be eligible for disability benefits. The Blue Book lists exactly what medical results or symptoms you’ll need to be approved for Social Security with your CHD. There are many cardiovascular disorders under which someone with a CHD could be eligible. Here are a couple of examples:

Chronic heart failure: this will qualify if you have systolic heart failure with diastolic dimensions greater than 6.0 cm or ejection fraction of 30% or less. You can also qualify with diastolic failure with left ventricular posterior wall plus septal thickness totaling 2.5 cm or greater, OR an enlarged left atrium greater or equal to 4.5 cm.

Arrhythmias: these will qualify if they’re uncontrolled with medication and you have episodes that cause you to faint or nearly faint.

Symptomatic congenital heart disease: there are three ways to qualify under this listing. If you have cyanosis (blue discoloration of skin) at rest, plus hematocrit of 55% or greater OR arterial O2 saturation of less than 90% in typical room air.

You can also qualify if you have “intermittent right-to-left shunting resulting in cyanosis, plus an arterial PO2 of 60 Torr or less.

Finally, someone with symptomatic congenital heart disease will qualify if they have secondary pulmonary vascular obstructive disease with pulmonary arterial systolic pressure elevated to at least 70% of the systemic arterial systolic pressure.

The entire Blue Book is available online, but (as you can see) the listings were written for medical professionals and can be very challenging to read for typical CHD patients. If you’re not sure if you’re eligible for benefits, you should review the Blue Book with your cardiologist to get an idea as to whether you’ll qualify.

 

Starting Your Application

 

The easiest way to apply for Social Security benefits is online on the SSA’s website. If you’d like the help from a Social Security representative, you can always apply in person at your local SSA office. Call the SSA toll free at 1-800-772-1213 to schedule an appointment to apply online today.

It should take five months or so to hear back from the SSA regarding your claim. Once approved, you can spend your monthly benefits on your upcoming medical care, childcare, home modifications, rent or a mortgage, groceries, or any other daily living needs.

You can apply for Social Security online at www.ssa.gov.

 

For more on when and how to apply, more helpful links include:

https://www.ssa.gov/disability/professionals/bluebook/4.00-Cardiovascular-Adult.htm (Blue Book)

https://www.disability-benefits-help.org/social-security-disability-locations (SSA offices nationwide)

https://www.ssa.gov/disability/disability.html

 

 

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

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 – Amit’s Story

Being a first time father, while exciting, can be stressful on its own. Add to it the prospect of your child being born with multiple heart defects, and the excitement over your first child turns to fear. This week, Amit Shah shares his story, learning his son’s diagnosis and how it has changed the meaning of Father’s Day.

 

 

 

 

To help people understand what Father’s Day means to me as a heart dad I have to give a little history of our journey.

We were so happy when we found out we were pregnant.  We were excited about this amazing new step in our lives.  We were thinking about how happy our family and friends would be, what silly Halloween costumes we would wear to announce baby Sai, the fun we would have looking for nursery items & planning a baby shower.  Alas that fairytale was not meant to be our journey.

At my wife’s 12-week ultrasound/OB appointment we had been told that there could be a potential for something to be wrong with our baby’s heart, but there was no need to worry, we just needed to get a precautionary echo.  A few weeks later at our 1st fetal echo we were told Sai definitely had an issue with the right side of his heart specifically the tricuspid valve.  The pit of my stomach dropped out from under me.  I started thinking this was not the way it was supposed to be, we are supposed to be celebrating.   This cannot be right, the doctor made a mistake, everything will be OK.  At that time little did I realize how our fetal cardiology appointments would get progressively worse, turns out things were not going to be OK.

At what I think was the 4th fetal echo, the tech and the cardiologist spent what felt like hours taking scan after scan as I held my wife’s hand.  Something felt off. When the cardiologist said we needed to find a conference room, I knew the news was not going to be good, but I was not prepared for what we were going to hear.  Our heart journey with Sai started prenatally with a diagnosis of tricuspid stenosis, progressed to a hypoplastic right heart, and then added an enlarged left atrium & ventricle with mitral valve complications, arrhythmia, and slight fluid buildup around his heart.  My head was spinning, and I felt sick as we got the news   At that point I had minimal idea what all of it meant.  We were prepared for HRHS and knew what we needed to do, but this was too much. I was just overwhelmed with sadness, anger, and wanted answers.  It all felt unfair.  A week later, on December 14th 2016 (the date is etched in

my mind), we had a more detailed confirmation fetal echo appointment with the hospital’s super tech to make sure nothing had been misdiagnosed.  Unfortunately, no mistakes were made in Sai’s diagnosis.  Due to all the complications discovered prenatally Sai had a poor prognosis (I hate that term), there was a very real likelihood that he may not make it.  If he did get to term we would have a very complicated situation since both sides of his heart had issues, we needed to prepare for him to pass or for a very a long road filled with surgeries and no guarantees.  We left the hospital that day and cried the hour back home.  We decided to get a second opinion 2 weeks later from another leading hospital with an excellent pediatric heart program, and they confirmed the diagnosis but with a grimmer prognosis.  Devastation is what I felt, when I was looking for hope.

We had spent the better part of my wife’s pregnancy emotionally drained and exhausted. I hated the fetal cardiology appointments and MFM appointments, I was pretty sure we would never get good news.   I tried to attend as many Doctor’s appointments as I could and started the great learning process of everything that was wrong with Sai’s heart.  I could get information on individual pieces but nothing on all of them together.  I normally think of myself as a strong person, but I was lost in my own head, I did not have any answers, I could not help Sai, and I did not know what to do to help my wife.  I can never imagine what she was going through, but she is a much stronger soul than I am.  We did our best to support one another through those months, but they were really dark for me.  At times my wife and I were mechanical, at times impersonal, and times overburdened with anxiety.  We were going to do everything

in our power to save Sai, but we knew the odds were stacked heavily against us.  From December 15th, 2016 until he was born, after breakfast, lunch, and dinner I would text or call to see if Sai had moved. This was a difficult but necessary routine.  Every time my wife said yes, we were closer to him getting to term, and I could rest easy for 4-6 hours.

Outside of my wife and some support groups, I did not know who to talk to about Sai’s situation especially

as it progressed.  How do you tell someone that your son potentially may not make it?  When people would ask how the pregnancy was going I usually said everything was great with a smile.  Privately with family and a few close friends I would breakdown at the thought of losing him.  In my mind I was not a strong father or husband, I was supposed to fix things and I could fix nothing.

Turns out you can only keep saying everything is “OK” or “great” for so long.  As we reached the 3rd trimester many friends and family started asking about the baby shower so that they could make plans.  The 1st five times people asked I said we were working on it, and after the next 5 times people asked we concluded that we need to send a communication explaining the situation.  This was one of the hardest e-mails I have written in my life.  There was not going to be a baby shower, and we need all the thoughts, prayers and good energy people could send our way.  I have read this e-mail many times, and still read it from time to time.  The goal has always been that I not to tear up, so far I have failed miserably.  As it turned out I needed to write that e-mail, I needed to let people know what was going on and share.  The e-mail updates helped me cope and express myself.  We would send an e-mail update out about every 2 weeks and keep people informed on big milestones.

As we approached Sai’s due date, we did get some positive news.  While things were still very serious, it seemed that Sai’s heart was repairing itself, and there had been no arrhythmia for 4 weeks, all amazing

signs that Sai was fighting to stay alive.  During this time we became aware of a new potential defect, Coarctation of the Aorta (CoA).  The potential CoA and the left side of his heart (including the mitral valve) turned into the most immediate concerns for the doctors.

The day he was born was one of the most amazing and scariest days in my life.  We did not get to hold him. I got 3 pictures before a team whisked him away to the NICU.  We were expecting surgery, and for 5 days we waited for next steps.  We held him, hugged him, and gave him as much love as we could, navigating wires, tubes and many annoying alarms.  Not being sure what would happen, we spent hour upon hour in the NICU, so much so, that the nurses said we need to take a break; they would call if there is an issue.  Five days and a lot of grey hairs later, we were told that Sai would actually not need surgery immediately.  Turns out the Aorta was actually functioning fine (branching in the scans had thrown

the doctor’s off) and his mitral valve was functional enough that we could wait and see.  While he had pulmonary hypertension and moderate/severe mitral valve regurgitation, we would be able to treat both with medicine. He was (and still is) a high risk candidate for surgery, and they would not do surgery unless it was absolutely necessary.  After 11 days in the NICU we could go home with a lot of follow up doctor’s visits.  It was amazing to bring him home and show him his new room.

So this brings us to Father’s Day.  We never really celebrated Father’s day growing up (for a number of different reasons).  I was not very close to my dad or grandfathers, and I vowed to myself that I was going to change that if I had children.  I wanted to show Sai he is surrounded by love. This became even more of my mission as we have progressed through this journey.

Father’s Day last year was an amazingly special day where my wife and I got to celebrate with our miracle.  It was a day filled with a lot of reflection for me, a day filled with tremendous joy and sadness.  Sai was about 10 weeks old at that point, and all I could think about was that I was happy he was alive, not in the hospital, did not need surgery immediately, and was actually eating.  I remember thinking how sad I would be if he wasn’t here.  There was something amazing about holding him in my arms as he slept and as I thought through the past year.

This year’s Father’s Day it is going to be different.  I am not going to spend time thinking about how Sai might not have been here but spend time celebrating him and what he has overcome.  Being a heart dad has taught me a lot.  This year I am not going to reflect on any sadness.  I am going to concentrate on how we can make a positive difference.  I am going to reflect on how Sai has changed our lives for the better and made us better people.  I believe that everything happens for a reason and that Sai is right where he is supposed to be (with us). Sai has shown us how to be strong, persevere, and never give up.  This year, even though he will fight with all of his might (he is quite independent), I want to hold him, hug him, and have him sleep on my shoulder.  I want to show him how much we love him and that we will do anything and everything to make sure he is OK.

My wife and I are forever changed as people.  We are humbled at the strength of heart kids and parents.  Through all this we have learned to not take life for granted, appreciate everything around us, and that miracles do happen.  We also realized that we are not alone and that there is so much help and support available.  I am not sure we would have gotten through this without the help from our family, friends, and support groups.  I never understood what people meant when they said that heart warriors are different, don’t underestimate them or give up on them, but now I do.

When we met with the surgeon prenatally he stated one thing that has really resonated with me in recent months.  He stated, “If he[Sai] is going to keep fighting, we need to fight for him”.  My wife and I have tried to expand on this and broaden it, so that we fight for all heart warriors.  Through this process we have met so many amazing kids and parents that have gone through or are going through so much more than we did.  My hope is that sharing our story helps another heart dad (or mom) to know that they are not alone, that there is support and help.  You may feel lost and alone, but there is a huge heart family out here that understands what you are going through.

Today Sai is doing incredibly well, even the doctors are amazed.  As we continue to educate ourselves and ask our doctors more specific questions, we have learned that Sai’s heart anatomy is pretty unique but functioning much better than expected.  It is scary to me that medical science does not have answers on why his heart defects occurred, why he is doing so well, or how he will do in the future.  I fear what the future may bring; I have so many thoughts that go through my head.  I don’t know if I am ready to hear the words “it is time,” but I know that we will do everything in our power to fight for Sai and that we are surrounded by people who are also fighting with us.

Happy Father’s Day to all the heart dads out there, remember we too have a voice.

 

 

 

Amit Shah is a husband and a father of a headstrong son, Sai, who has multiple heart defects.  He is pretty convinced that Sai is trying to take over the world.  Amit is trying to navigate life as a new parent and a child with CHDs.  He hopes through spreading awareness and knowledge of CHD that doctors and researchers can eventually find a cure.