Your Health vs. Your Career

This week we hear from Samantha Michaud, a CHD warrior, who speaks about how CHD has affected her career opportunities in life. And how your health ultimately has to come before your career. 

I was born a healthy (or so they thought) baby. I spent the first 2 months of my life slowly dying and no one knew what was wrong. It wasn’t until my 2 month check up that my family doctor heard something wrong with my heart. I was immediately sent to the hospital where they did an echocardiogram on my heart & saw something wasn’t right. I was then sent to Toronto Sick Kids via air ambulance. More tests were run. After a few days they decided to do a heart catheterization to confirm their suspicion. I was born with a congenital heart defect called Tetralogy Of Fallot. A few days after that I had full blown open heart surgery.

Overall, I had a rather normal childhood I was able to play hockey, volleyball and even flag football. I didn’t start having issues again until I was an adult. Later on in my adult years I kept complaining of fluttering in my chest. It was shoved off as anxiety. Then I got pregnant at 20 years old. My previous years tests results showed I was able to carry a pregnancy. Yay! When I was 24 weeks pregnant I had a halter monitor done due to the fact I blacked out one day at work and had to leave. It turns out that my blacking out episode was an episode of an arrhythmia called Ventricular Tachycardia. I was happy I finally had answers as to why I didn’t feel well sometimes and why I felt fluttering in my chest. But after one episode where I nearly fainted giving someone a shower, I knew my time had come. I knew I had to leave my job behind. You see, as someone with CHD being around heat makes me feel unwell. But having Ventricular Tachycardia secondary to my Tetralogy of Fallot just made that day all the more worse. My heart rate began to speed up, my heart began beating funny and I started to feel weak and faint. I got out of my clients house for fresh air, and called the office to go home. A week later I quit my job due to my health reasons.    

 

I was devastated that the stress from my job could cause so many issues that I would have to quit. My job requires me to deal with stress. Taking care of the sick, disabled & elderly was my calling in life, but due to the stress it caused me to deal with on the daily, I left my job. It was really hard to deal with as I loved my job and I loved what I did. But for my health I had too.

Leaving my job as a personal support worker has left me feeling helpless. It was a job I thoroughly enjoyed. I felt like I was giving back to healthcare, for what they have done for me. I helped people of all ages and created great therapeutic relationships with everyone I saw & their families. Leaving a job I really enjoyed was not the easiest decision to make. But I do see a bright future ahead of me. I have a beautiful, heart healthy, baby girl, and the opportunities are endless for the both of us.

Hello, my name is Samantha Michaud. I am 22 years old and have a 10 month old daughter. I am a personal support worker. I see a cardiologist once a year for my Tetralogy Of Fallot. I see an electrophysiologist every 3-4 months for my Ventricular Tachycardia.

Hidden Scars

At the start of the new year we often reflect on the year that has just passed, and for most of us, work and/or school is a large part of that reflection. We are kicking off the year with a series on how CHD affects patients, and families at school and work.  This post is written by an individual who wishes to remain anonymous, as they reflect back on their career and the role that CHD has played in their work. 

 

I remind myself that this time I will handle things differently.  I remind my myself that I am a grown 51 year old woman that has raised 2 kids and managed to maintain a marriage for 25 years.  This time, with this job, I will not just walk away when I can’t handle the outside stress in my life usually, brought on from my health.  This time I will communicate with my supervisor and explain to he or she what is going on in my life and have them help me find a solution, after all that is what a grown up does.

 

Call me lucky, but four fulfilling careers later, I am still working a great job that holds my interest, and I am surrounded by wonderful co-workers.  I know that there will be another health emergency in the future, that is just the way life is for a person with CHD.  I tell myself, when the next health incident happens, I will not give 5 days notice to an employer, like I did with the last job.  I will not just close down the doors on a business I worked so hard to build, like I did two careers ago. And I definitely will not walk away from an amazing career as an FBI analyst (a dream I had since I was young) like I did after I landed my first job out of college.

 

My parents taught me from a young age to find a job with health benefits.  They thought I should be a teacher, after all, as a teacher you will have summers off and “the rest during the summer will be good for you.” I understood the message, they really meant “be good for your heart.” Maybe that is why I leaned towards a job with government, the need for health benefits has been ingrained since I was young.

 

When I was growing up the environment was different, you hid your scars, you hid your health issues.  I remember applying for my first job it was with the FBI.  I filled out the 30 page background check form and stopped when I got to the medical section.  How do I spin this?  Do I put down congenital heart disease?  Do I write down Tetralogy of Fallot?  What if I write, “Hole in the heart – corrected 1972.”  That is not a lie I thought to myself, so I went with that explanation, they could ask for more information if they needed it.  Of course my education helped me land that first job, but I am still convinced that things would be different if I had fully disclosed my medical history.

 

No one ever taught me how to communicate my health issues with my employer.  I have been taught how to write a resume and how to interview. I have an excellent work ethic.  However, I am 51 and still don’t know how, or when, to talk to an employer about my health.  I know my future holds a pacemaker battery replacements, pulmonary valve replacements, and much time in the cath lab.  When should you discuss your health with your employer? Should you be upfront from the beginning or should you wait until an emergency and try to explain why you won’t be in for a week or two?  I know the best option lies in the middle.  However, I am at a loss as to where that balance is.  I guess you need to factor in the employer, job, personalities, and work environment.  I wish there was some magical formula one could use to decide at what point disclosure is best.

 

I look back with my career history with regret on how I choose not to be upfront regarding my health history.  I tell myself, this time I will handle things differently, but I know I will probably continue on my current path of non-disclosure.

The Gifts that Life Brings

Hello PCHA! I hope everyone is enjoying the holiday season. In the spirit of giving, here are a few short anecdotes on the most memorable gifts that life has brought us. Happy Holidays!!! 

The best Christmas present I received in recent years was family abandoning our usual Christmas traditions and coming to visit me after I was re-admitted to the hospital. My Mom having brought Christmas dinner to the hospital, gifts from my family, neurosurgeon and nurses alike and still being able to watch Christmas Eve service on TV. I was just grateful to have family and a good medical team.

– Erica Thiel; MPS I Hurler Scheie Syndrome w/aortic valve stenosis and insufficiency and Mitral valve stenosis and insufficiency, 35 years old.

One of the best gifts I have ever received came in a small blue paper bag with handles.  The contents escape me, except for the full bag of chocolate candies. What this gift represented was a reminder that I was not alone. That in one of the most challenging series of events in my entire life – placing my newborn baby first into a helicopter, then into the hands of doctor to perform life saving heart surgery – when all of my being was being poured into my baby, someone was thinking of me.  That is a gift I pay forward every single moment that I can.

– Amy Basken; mom to Nicholas, almost 14 years old, now.

The best Christmas gift my husband and I ever received was our baby twins coming home from the hospital. One has a CHD and the other is heart healthy but because of both the CHD and other complications, odds weren’t great for survival. They were born in mid October. One came home in late November and the other came home a couple of weeks before Christmas and we were finally all home together. The road ahead was/is still long, but it was magical.

– Meredith Rasmussen Atkinson; mom to Mirabel and Sofia Atkinson, 14 years old, now.

The best gift I have ever received was a Newfoundland puppy. I was in the hospital after my fourth open heart surgery, and my parent’s friends, who were breeding Newfoundlands, just had a litter of puppies. They told me that I would get to bring home a puppy when I got out of the hospital. Just knowing that when I got home I would have a brand new puppy, kept my spirits high, and provided a huge distraction from my current situation. I am forever grateful to that family for gifting me such a beautiful dog, and ultimately, a great friend. 

– Lauren Wells; Ebstein’s Anomaly, 24 years old.

 

 

 

November Recap – Grateful Hearts

Throughout the month of November, we took a look at everything we have to be grateful for, through the hard times and the good. And we discovered that we have so much to be grateful for in this crazy thing called life! 

I just want to make a quick note to the PCHA community, next week you won’t find our usual PCHA blog. Keep an eye out for something special this December and be sure to check back. In the mean time, we are posting tons of great material, so be sure to stay up to date! 

 

A Journey Shared – Joseph Burns

The Gift of Life – Sara Engstrom

Angels in Scrubs

Always Enough – Rebeka Acosta

Always Enough – Rebeka Acosta

In our last post on the series of gratitude, we hear from Rebeka Acosta. Rebeka recognizes how there are so many people to be grateful for, and how those people form a community and help you through the frustrations of life. 

Gratitude turns what we have into enough. -Unknown

At the end of any given day, when the dragons have been slayed, I crash into a puddle of physical and emotional exhaustion. Special needs parenting is hard work and it is terribly easy to let it swallow you whole. There are far more places to hide and wallow than there are rainbows to jump through.

And that is precisely why it has to be enough.

Oh, let me be a part of the narrative

In the story they will write someday

Let this moment be the first chapter.

Where you decide to stay

And I could be enough

And we could be enough

That would be enough

-Hamilton the Musical

It took me a few years to truly welcome the joys and pains of parenting special kiddos. I suppose it is easy enough to find gratitude in the things that make life easier, but as the child of a social worker and teacher, I am always drawn to my fellow humans. No matter how quick the moments come and go, I’m always trying to find the bright spot.

Every year as the holiday season begins, I love addressing cards to friends and family. As I sat at the kitchen table late one night last week, with the dogs curled at my feet, one of the boys appeared in tears. My initial internal reaction was frustration. Everyone was finally in bed. It had been a long day. Couldn’t I get just one hour of peace to address these cards?!

I took a deep breath. Ten minutes is enough, I thought. It will just have to be enough.

He crawled into my lap even though he had far outgrown it. He whispered quietly and asked who the cards were for. We spent the next hour talking about each person and adding a few to the list. This morning I revisited the pile of cards and sitting on top were the five my kiddo had requested, with a sticky note telling me why they were important.

Dr. K: for being my first doctor and teaching Mommy to take care of me

Dr. Becky: for saving Kato’s life (his dog)

The Apple Store: for cheering for me and teaching me to code

Dr. J and my Boston team: you helped me live

Inspirada (our neighborhood): for being my home

May you each find gratitude in the connections you forge and mountains you summit. May you slow down and find the bright spots in the simple moments. And may it always be enough.

 

Rebeka Acosta lives outside Las Vegas with her husband, two heart warriors and
two Great Danes. A researcher by nature and healthcare finance coordinator by
training, she enjoys keeping up with congenital cardiac literature and always
reviews insurance claims line by line. She recently passed the national exam to
become Nevada’s first Board Certified Patient Advocate.
Before relocating to Nevada, Rebeka was a founding member of the Washington
chapter of PCHA. She now volunteers on the National Steering Committee and
enjoys attending the annual legislative conference and transparency summit. She
is especially invested in advocacy for adopted patients and patients of color.
Rebeka welcomes connections at racosta@conqueringchd.org.

Angels in Scrubs

In times of hardships, it can often be difficult to maintain gratitude. This week, Heather Speakman shares with PCHA how hardships can often teach us the most about gratitude.

It’s the Eve of Thanksgiving and I can’t help but feel overwhelming gratitude to the team of people that take care of our sweet Madison. I know that there are a few hundred stories and posts of a very similar sentiment but I’ve never been one to let someone else tell my story. So here’s my version

To all of the Doctors, NP’s, and PA’s, I see you.

Image result for gratitudeYou’ve explained procedure after procedure, making sure I understand what’s going to happen. You’ve stopped what you’re doing to comfort me when my daughter’s heart rate dropped to 50, assuring me why it happened and how you’re going to fix it. I’ve gotten update after update and I see the look on your face when you wish it was better news. I see the hope in your eyes that she will get better and that you will get her in my arms no matter what. I see how tired you are but no matter how busy it is you make sure everyone is taken care of, often hopping from room to room with coffee in hand. I see that you’re up all night and you still greet me with a smile and ask how I’m doing. I’ve heard your voice on the phone in the middle of the night asking for consent, I know it can’t be easy to ask for permission in a time like this but thank you for being kind. I’ve heard you say, “Are you coming in soon?” knowing that you have to sit me down and have a really hard conversation about what another blood clot could do to my daughter. You’ve greeted me at the door because you couldn’t wait to tell me the good news that she’s going to come off Ecmo. I’ve high-fived you in rounds because we made it over a huge bump in the road. You’ve made it easy to report back to family what the plan is for the day and what it means so I can remember it easily. You’ve looked me in the eyes and promised that you will tell me when it’s too much because I didn’t want to be that mom who put her baby through unnecessary procedures if the result was going to be the same. You’ve also given me the look that says you’re up for the fight and you’ll do everything in your power to save her.

I’ve had to call your name quickly before you left her room to tell you that I think it’s time, she’s tired. With tears in your eyes, your hand holding mine you slowed your breath and regrettably agreed. My heart wasn’t the only one breaking, yours was too. You’ve come to visit, paying your respects and giving your condolences, telling us that she fought and fought hard. You’ve empowered me, reminding me that this is OUR journey with Madison, no one else’s.Image result for gratitude

To the CICU nurses, I see you.

No matter how many times that pump goes off or the monitor beeps you’re there. You’re always asking me if I’m okay, even if you’re not our nurse that day. You’ve seen our baby post op and assured me that there will be ups and downs in the next 24 hours. You’ve let us in the room even when you weren’t ready because you knew we could handle it. You’ve kicked us out so we can get lunch and promised to call if anything changes. I’ve seen you on your hands and knees checking chest tube drainage, making sure she’s not too sleepy or not too agitated on her pain meds, changing countless dressings on her lines. You’ve been able to get IV’s in places like her head, and feet. You’ve hugged me and told me to go home after a surprise phone call in the middle of the night. Telling me that you’ll take good care of her. I’ve seen you try not to laugh when we’re being goofy and super inappropriate and eventually you break down and participate. I hope you know that we love it when you talk to us and ask questions about our life outside of the hospital. It makes me feel like there WILL be a life outside. I love that you talk out loud when you’re trying to figure out why she doesn’t look right, it gives me comfort to know that you’re not afraid to tell us when something is “off”. Although I must say, you have pretty good poker faces. There have been times where you come to us with a problem but you never come without a plan. I’ve seen the look on your face when you have to come in after the doctor just gave us bad news. Even still, you ask if you can get us anything. I wish you could see the look on your face when I ask for vodka and Xanax, I never said it was for me ;0). You’ve told me to get my kisses and love in before each surgery or procedure. You’ve celebrated victories with me, big and small. I love that you come to say hi, even if you’re busy. You’ve greeted me with a smile and a full report if I missed rounds. I’ve laughed with you until my cheeks hurt.  You let me hold my baby girl after 28 days on the ventilator because you knew I needed it. I’ve seen you work hard in other rooms when it wasn’t an easy day and cover each others lunches sometimes jumping from one room to another.

You’ve talked to us about Madi’s prognosis and helped us ask the hard questions. I’ve seen you love on her like a proud auntie or fairy godmother. You’ve protected our privacy fiercely, drawing curtains and adding a sign to the door. You’ve done some impressive acrobatics hopping up and down from counters so Erik and I could switch spots, despite the ventilator and a few dozen lines in the way. I’ve seen you check on me from your desk, making sure I was comfortable as I held my baby girl in the middle of the night for the last time. You assured me that it’s no trouble at all to put her back in bed if I needed to rest.

You volunteered to be her nurse on the hardest day of my life, one of the many reasons why I think about you every day. You brought clothes from home because you didn’t know if I had anything to change her into. You’ve granted me every wish on my sweet girl’s last day on Earth, minus the Xanax and vodka. You’ve laughed with me and let me cuss like a sailor, giving countless hugs and allowing me to be whatever I needed in that moment. I’ve seen the tears in your eyes as you placed Madi into Erik’s arms so we could say goodbye to our brave, strong girl.

To the “Special Teams” I see you.

I’ve seen you talk to my daughter in your baby voice and call her peanut.  You’ve checked setting after setting on her ventilator, rooting for her every step of the way. You ask me how she’s doing, even though you already know she’s having a great day. You always smile and say hi when you’re walking down the hall or offer a wave from a distance. You’ve done trial after trial to make sure she’s ready to be off the vent.

You gave Madi her first and only Christmas tree, decorated with bells and Beads of Courage, it will stay up year long at our house. No matter how many times we had to switch places to hold her, you were always there with a smile and saying “no problem at all.”

You come and chat with me to let me forget about how tough this can be. I get to tell you the dumb thing I did that week. You’ve listened to me happy or sad and remind me that it’s okay to not be okay. You ask if we’re eating and sleeping. You’ve offered meal vouchers on nights when we didn’t want to leave. I’ve seen you after a rough weekend and distract me with a funny story. You promise that if you come visit it’s not because someone called you to check on me.

You’ve allowed me to speak freely and openly without judgement. I’ve told you how hard this has been financially. You’ve provided resources and help when I was ashamed and embarrassed, assuring me that something like this can cripple a hundred thousand dollar savings account. You’ve called us to tell us someone adopted us for Christmas, I was so relieved.

You were there when I had to tell my thirteen year old daughter that her sister wasn’t going to come home, you listened as I apologized to her for what’s to come. I’ve seen you make Madi’s hand and foot prints, asking Tristyn if she wanted to help.

You’ve given me the power to be an advocate for my daughter, helping me make some really tough decisions. You’ve rallied the troops and packed her hospital room so I could read this very blog to all of you, that moment was incredibly special and I’ll cherish it always.

We’ve prayed together after our sweet angel gained her wings. You’ve helped usher my family and I out of her room, telling me we could stay as long as we wanted but you knew I couldn’t take it anymore. You’ve promised to stay with her until she had to go.

I’ve heard your voice on the intercom so I can come back to see my baby. You’ve given me a red sticker everyday and make sure I’m not full of icky germs. The occasional chocolate is a really good plus. You’ve stocked carts and given me bottles and labels galore.

I know that there are many more angels in scrubs and business casual gear that we don’t see but we appreciate you and everything you do to make sure our daughter is taken care of.

I am constantly telling my friends and family how amazing you all are. Sometimes they even ask for you by name. We pray for you everyday. Being in the cardiac ICU is rough and I hope you know that we appreciate and love you. You’ve become a special part of our extended family and made this journey that much easier.

I expected to grieve the loss of my amazing daughter but what I wasn’t expecting was grieving the loss of her amazing medical team. We miss you all so much.

Thank you doesn’t even begin to cover it but this thankful, grateful mama is going to tell everyone.

Heather Speakman has been married to her high school sweetheart Erik for 13 years and has 4 children, Tristyn Gage, Hayden and Madison. Madison was born with a heart defect called hypoplastic left heart syndrome with heterotaxy and 3 other defects. She lived for 41 days before she succumbed to complications of her heart defects and passed away on November 30th, 2017. Since Madi’s passing Heather has helped raise awareness for congenital heart defects. Heather is an avid blogger, and blogs as a way to help cope with her grief and shares her feelings in the hopes that people will know they’re not alone.

The Gift of Life – Sara Engstrom

In the spirit of Thanksgiving, we are continuing our series on gratitude. This week we hear from Sara, a CHD warrior who shares how gratitude has played a role in her life. 

At six months old, I was diagnosed with Shone’s complex, a myriad of heart defects that impacts each patient differently. My defects include a bicuspid aortic valve, parachute mitral valve, persistent left superior vena cava, and an aortic coarctation. When I was 8 months old, I had a closed heart surgery to repair the coarctation.  I am grateful for my pediatrician, who could not feel the pulses in my feet and was immediately alarmed. Without her, I do not know how long it would have been until the coarctation was discovered. Each year since my surgery, I have followed with a cardiologist who specializes in CHD in order to keep tabs on my valve function and stability. My first cardiologist made the largest impact on me in my childhood, sparking an interest in medicine at a young age. Being exposed to the hospital environment all my life, I have decided to pursue a career as a pediatric cardiologist, something that I would have never considered if it weren’t for my CHD.

I have struggled with having a heart defect from time to time and it has taken a toll on my mental health. During the dark times, I must rely on my family and friends to pull me through. I am indebted to them for all of the support that they have given me. Some have been standing by my side since my surgery over two decades ago, and others more new to my life who have been the most understanding and patient friends I could ask for. My family members have stood by me, speaking for me when I was an infant, making sure I was getting the best care I could receive. It’s definitely not something I think about every day, but my livelihood and future were in the hands of my parents, grandparents, godparents, aunts, and uncles and because of them, I am where I am today, healthy and thriving. I don’t thank them all for the loads of support that I have received over the years. When times get hard and I’m feeling lonely, I know that I can count on the wonderful people in my life to keep me grounded.

Throughout my life, I have not met many others with the same defect as me, making me feel isolated in this battle. Last year, I wrote an article talking about my CHD. A few months later, I received a message from a stranger about her struggle with Shone’s complex! This was the first time I have ever been in contact with someone with Shone’s complex. I befriended her immediately. We got to talking and I realized we have so much in common. We both love to travel, try new things, and are pursuing careers in the medical field. I am beyond thankful that she reached out to me. My relationship with her has helped me realize that it is very important to not only share your story with others but also share similar experiences and stories with people who have been through the same.

Having a congenital heart defect has given me more gifts than I can count. I am grateful for my love of medicine that aroused as a result of CHD. I am thankful for the people who have supported me and held me up through my battle, and I am grateful for the opportunities and friendships that have been given to me throughout this journey.

Sara Engstrom is a senior at Wayne State University studying biomedical physics. She plans on applying to medical school in the future to pursue her dreams of becoming a pediatric cardiologist. She lives with Shone’s Complex and is dedicated to telling her story. She loves advocating for CHD. In her free time, she likes to play the clarinet, catch up on the latest TV shows, play with her German shepherd, and spend time with her family and friends.

 

A Journey Shared – Joseph Burns

In the month of November we are focusing our attention on gratitude, and how despite all the hardships that life brings, there are so many beautiful things for which we have to be grateful. Today we hear from Joseph, a CHD warrior, studying to be a physician himself. 

 Throughout my life, I have been the recipient of numerous gifts which I will never be able to repay. I was born prematurely with a bicuspid aortic valve. My childhood was a series of constant doctor visits. It was during these early years as a patient that I developed an intimate relationship with my own pediatric cardiologist, Dr. Shailaja Nadkarni. Her presence in my life was the first of these gifts, as our relationship transformed from that of a patient and physician to student and educator to admirer and mentor. Her willingness to embrace my interest in congenital heart disease (CHD) undoubtedly set me on my current career path and her consistent support throughout my childhood and young adulthood was transformative in my choice to pursue medicine as a career.

In 2014 it became clear that I would need surgical intervention. The week of my operation was also the last week to accept my invitation to join the Class of 2019 at the Herbert Wertheim College of Medicine at Florida International University. It was during my surgery that I received my second profound gift—a chance at a healthier life afforded to me by the valve of an organ donor. This thankless, selfless sacrifice has granted me a new lease on my health and I am elated to be surviving and thriving post-correction. This anonymous gesture is one on which I reflect frequently, and I owe it to this donor to live my life to the fullest, not only for my own sake, but for his or hers as well.

During my recovery I spent time focusing on the compassionate pediatric cardiologist that I hope to become. My surgical scar lies across my chest as a reminder of that goal. I am proud of it. It ties me to my past as a patient, my present as a student, my future as a cardiologist, and the unspeakable bond that I will share with my patients and every child that has faced cardiovascular disease.

The third and most unexpected gift came to me in the Fall of 2017 when I applied for and was selected as the recipient of the inaugural Toti Mendez #23 Memorial Scholarship.

Toti Mendez, a sophomore pitcher with the FIU Panthers, was 20 when he died suddenly in 2000 from cardiomyopathy. FIU retired his jersey, number 23. His family established the scholarship and also dedicated “Harvey”, the school’s cardiac auscultation simulator in his honor.

Earlier this year, I had the distinct pleasure of meeting Ms. Maruchi Mendez, Toti’s mother. Though we had only a few moments together, it seems that we are inextricably bound by our experiences with heart disease and by Toti’s legacy. Her generosity and commitment to Toti’s remembrance that enables me to attend this institution and to chase my dreams to treat individuals like Toti and like me. Toti’s memory endures in my own work, including a dedication in my article “Disparities in Hypertrophic Cardiomyopathy: A Narrative Review of Current Literature” scheduled for release in 2018.

And so, for every encounter with Harvey, I am grateful. For every patient encounter in which I am prepared to recognize murmurs, I am thankful. For every child I will treat during my career, I am humbled. For every opportunity afforded to me during my time at this institution, I am privileged. Simply, if not for the contributions of the Mendez family and countless others, I am confident that my educational pursuits would be far more burdensome.

My journey is not mine. If not for the endless love and support of my family, friends, my donor, the Mendez family and every clinician who has treated and trained me, there is no doubt that I would not be in the position in which I find myself today. Now, as I begin interviewing for residency positions across the country, I realize more than ever that this has never been a plight of my own. Rather, with my story includes tomes of family support, of love and loss, of challenges and triumphs, volumes on the life of the donor who has granted me a second chance with my cardiac health and to the anonymous families who recognize a piece of their sons and daughters in me, who feel the magnetic bond of our scars, understanding that we are inextricably linked by our past, our present, and our future. I am elated to continue this journey as a physician, building relationships and transforming life for the welfare of all. However, this has never been a solo venture. My ambitions and my accomplishments, rather, are reflections of all of the generosity and support I have received while expecting nothing in return. It is this selflessness, this altruism that reminds me that I represent the hopes and dreams of countless individuals who have invested in my success. For this army of support and love I am eternally grateful and to have connected with a community of CHD warriors empowers me to continue to reach for my absolute potential in all that I undertake.

 

Joseph Burns is a member of the Class of 2019 at the Herbert Wertheim College of Medicine at Florida International University in Miami, FL. He is a native of Orlando, FL and is an alumnus of Stetson University. He is passionate about the arts and community engagement, having served as the Art Director of the Mammography Art Initiative and the Community Service Chair for the Panther Learning Communities. His interests include congenital heart disease and American Indian Health. He hopes to pursue a career in adult congenital cardiology.

Options- With Dr. Gurvitz

In the final week of our October theme, we hear from Dr. Gurvitz, who explores the many different options that women with CHD have, when they are thinking about starting a family. 

As both a pediatric and adult congenital cardiologist, I have learned to care for all ages of patients in many different circumstances.  As part of the focus on women with congenital heart defects (CHDs), I thought I would briefly share with you the stories of 3 young women seen in my clinic recently who were all considering starting families of their own. First, meet Jane.  She is a 26 year old woman with a single ventricle and a Fontan procedure who felt well and came for pre-pregnancy counseling and didn’t realize her oxygen saturation of 85-88% would be a concern when carrying a pregnancy.  Next, meet Alison.  She is a 35 year old woman with tetralogy of Fallot referred back to clinic by her obstetrician after a 10 year gap in care as she is now pregnant in her second trimester. Third, meet Barbara.  She is a 31 yo woman with shone’s complex, a mechanical aortic valve on blood thinners and moderate pulmonary hypertension who is concerned about the risks of pregnancy to herself and the baby. 

The incredible success of pediatric cardiology and cardiac surgery over the past decades has resulted in excellent survival to adulthood for children with CHDs.  For many young women with CHDs, with age comes the potential for pregnancy and the questions of can I have children? Do I want to start a family? What are the risks to me or my child?  Will I be healthy enough to parent and to live to see him/her grow up?  Many of these women will also not necessarily know where to turn for the answers, especially if these topics have not been touched upon in the teen and young adult years.  Do they ask their parents? The adult or pediatric cardiologist? The obstetrician? Or do they seek answers on the internet or in social media sites?

In my practice, I have found that the answer is typically ‘yes’ to all those avenues of information or a resounding no because people are either overwhelmed or completely unaware that the heart condition may be a factor in pregnancy. While the women in the stories above and the many others that present considering starting families are different, the message we can send as healthcare providers, friends and family can be remarkably similar.  That message starts with building your team before you get pregnant.  The healthcare team typically consists of your congenital cardiologist (pediatric or adult congenital or both), a maternal-fetal medicine specialist (also called high-risk obstetrician) and an OB anesthesiologist (usually works with the OB team).  This team of physicians can help the woman understand her heart condition, how the heart condition and pregnancy interact for both the mother and the baby, and how best to manage the delivery in the most optimal way.  The team should also be able to review other options for starting a family such as adoption or in-vitro fertilization and surrogacy.

It is best to assemble this team prior to pregnancy to ensure that the woman’s health status is the best it can be and to review expectations for the pregnancy and post-partum time as much as possible.  This might include timing of monitoring during pregnancy and after, and the need for fetal echo-cardiogram screening for the baby.  For many women with CHDs, this pre-pregnancy evaluation will result in a ‘green light’ to proceed. However, for some it will mean further evaluation or procedures prior to pregnancy.  Others may decide that the risk and physical toll of carrying a pregnancy to themselves or the baby is higher than they would like to take, even if pregnancy might be possible.

My recent clinic patients are a good example of the multiple paths that can materialize.  Jane had a full cardiac evaluation and underwent a heart catheterization procedure that improved her oxygen saturation to the mid-90s. This will lower the complication risk for her and a future baby. She and her husband have consulted with the maternal-fetal medicine specialists and, while carrying a pregnancy with a Fontan circulation can have complications, she is otherwise doing well and they are now planning a pregnancy.  Alison underwent full cardiac evaluation and was found to have significant pulmonary valve disease but was tolerating it well.  She did well with the pregnancy and is now recovering and raising her baby.  Now that she is no longer pregnant, she will undergo further testing to determine if she will need an intervention for her valve.  Finally, Barbara completed her cardiac evaluation and also consulted with maternal-fetal medicine.  She and her husband decided that the risk to her and the developing baby due to her underlying condition and medications were more than they wanted to take.  They decided to start their family using IVF and a surrogate and she underwent successful egg harvest under the close team care of reproductive endocrinology and cardiology. 

In summary, the large majority of women born with CHDs will survive to adulthood and many will consider starting families of their own. Most of these women will be able to do so successfully either through pregnancy or other means.  As an ACHD cardiologist, this is one of the most moving and personal journeys we take with our patients.   For the women with CHDs, staying in care and forming a team of congenital cardiology and high-risk obstetrics is key to understanding the risks and expectations for starting and raising a family and to be able to make informed decisions.

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Dr. Gurvitz is a pediatric and adult congenital cardiologist practicing in the Boston Adult Congenital Heart program at Boston Children’s and Brigham and Women’s hospitals.  She did her training on the west coast in the UCLA healthcare system for medical school, residency and fellowship.  She also has a Master’s degree in Health Services  from the UCLA School of Public Health.  She spends most of her time in inpatient and outpatient clinical care of adults with congenital heart disease and doing research regarding public health aspects of congenital heart disease including epidemiology, quality of care, and transition from pediatric to adult care.  She has NIH funded grants to study psycho-social and cognitive outcomes in adults with CHD.  Dr. Gurvitz also serves as vice-chair of the Congenital Heart Public Health Consortium and immediate past chair of the American Heart Association Adult CHD committee. During her free time, Dr. Gurvitz loves to practice the art of cooking, and training to be a triathlete.