“Taboo” ACHD Activities

Today’s post is on a subject that people with CHD don’t always discuss, but it is a very important topic nonetheless: sex. Below is one woman’s account of what it’s like to be with her husband, with CHD. Due to the sensitive nature of this topic our blogger has asked to remain anonymous.  

Shedding a light into a CHD patients sex life is something people just don’t talk about. And I get it. Sex is the most personal and intimate form of physical connection someone can have with another human being. The topic also gets the back seat because as a CHD patient, we deal with life and death situations. Sex becomes an afterthought.

When it comes to sex, there are two questions I always ponder with: one, am I beautiful enough to have sex and two, will I be able to physically endure sex.

As a woman, we are constantly told by the media of what a perfect body looks like. You will be hard pressed to find anyone representing scars in a Victoria Secret advertisement, new bathing suit line or in a movie. With these constant images of what a perfect body should be, it makes it that much harder to be physically vulnerable with someone. It took me a long time to feel comfortable with my body and that only truly happened when I married my husband. My husband validates that my body is beautiful. I have never felt insecure in our sex life because of him. He makes me feel confident in every aspect.

My CHD health has been changing and with that, my sex life has changed as well…not drastically but it has changed. I am not always able to physically endure sex. There will be times I have to pause or stop to catch my breath. It is frustrating to say the least, especially when you are finding your groove. I am so thankful that my husband never pressures me to keep going. He listens and trusts me when I need a break. Once a skipped beat has passed or I am no longer short of breath, we pick up where we left off.  

I truly believe that my husband and I have a beautiful sex life because he allows me to be vulnerable without judgement. He validates my beauty and trusts me when I need a break. Sex doesn’t have to be a scary thing or off the table for patients with CHD. It is all about finding the right person to share that life with. Someone who understands, embraces your scars and follows your lead.

Taking Back Some Control

For the month of March we will be discussing the various “taboo” subjects that come up in thinking about life with CHD. This week we will hear from Jennifer, a CHD warrior, who talks about how she took back some control by choosing some of her scars.

I was trying on dresses for my best friends rehearsal dinner. My mom, sister, and I had gone shopping together. I had come out of the fitting room to get my zipper zipped, without realizing my new tattoo was visible – the dress gaping open in back. My mom hadn’t seen it yet.

When my mom noticed the tattoo she wasn’t mad per se, but her disapproval was apparent. I was, however, 30 years old and had the right to make decisions about my own body.  And of course, this wasn’t the first time we found ourselves in this situation.

Growing up my parents were not big fans of body piercings or tattoos. While my best friend, and pretty much every girl in my class, had her ears pierced basically since birth, my mom made me wait. In fairness, I only had to wait to get mine done until after my 1st communion in second grade, but at the time it seemed like FOREVER, since all my friends had it done already.

When I got to high school, I wanted a second hole in my lobes. I knew my mom would never let me, so I convinced my aunt to take me instead.

Senior year, like many teenagers, I decided I wanted to get something – ANYTHING – else pierced the day I turned 18. It was a rite of passage, after all. But I would be having surgery number 2 just a few months prior, and my mom didn’t think it would be a good idea. To be honest, this was the first time it even crossed my mind that there could be link between piercings and heart health. I thought my mom was just being over protective.

So being a stubborn teenager, I wasn’t going to take no for an answer. Days after surgery, on rounds, I asked the surgeon if I could get my cartilage pierced. I felt vindicated when he gave me a very cautious green-light. So the day I turned 18, I walked myself to the Claire’s near school and put another stud in my ear!  And my mom took it like many parents do, looking on a little unhappy, a little disappointed, but accepting that as I grow up, somethings are out of her hands.

Over the years, I got a second cartilage piercing and pierced my nose. Twice. No, I didn’t have two nose piercings at once, but I was so afraid of my parents seeing it the first time around, I took it out, only to do it all over again a few months later!

Once I’d had enough piercings, I moved onto tattoos.

A couple years after graduating college, my friends and I decided to get tattoos together.  I got a tiny heart on my left foot, with a tiny crooked halo and a three-feathered wing off one side. I got it to remind me of my grandfather, to remind myself he was always with me.

At the end of 2011, I set out to do 30 before 30 –  a list of 30 things to do before I turned 30. The list included tasks like “do an anonymous good deed” or “go for a hike at sunrise”. I also included “get tattoo #2” (I did at least think ahead to pre-medicate). I wanted something that symbolized my hope for my life.  And since I love words, I went with a quote. It reads, “Go confidently in the direction of your dreams. Live the life you’ve imagined.” 

I had spent a good portion of my life being afraid to live it, so while reaching that milestone, 30 years old, I wanted to celebrate, to push myself out of my comfort zone, with a reminder that I had the strength to make my life what I wanted it to be.  That’s what the whole list was about anyway, and the tattoo would be permanent  proof of the accomplishment.

So as my mom zipped my dress and I assessed myself in the mirror, she asked me, “Why do you want to do that to your body anyway?”

I said, “I have so many scars already, might as well have a few I choose.”  And I gave her reflection in the mirror a goofy grin.

My tattoos and piercings have meant different things to me as I’ve aged. First, it was the rush of excitement in the rebellion, in the wildness of it.  It felt like self expression, like coming of age, and, most importantly, it feels like taking control of my body.  And I can’t wait to add more!

*NOTE – Be sure to check in with your cardiac care team prior to piercings or tattoos. While you may or may not have restrictions regarding these, your team may recommend certain precautions like pre-medication. 


  Jennifer Weiner was diagnosed with Truncus Arteriosus after birth in 1982. She has had two open heart repair surgeries, at 18 months old and 17 years. After complications arose and various anomalies were uncovered in early adulthood, Jennifer had a stent placed in her LPA, received an ICD, and will be having her 3rd open heart surgery later this month. Now 37, she is a graduate of DePaul University, with a degree in Elementary Education and an MA in English and Creative Writing, from SNHU. Jennifer currently volunteers for the Pediatric Congenital Heart Association, both nationally and locally, as the ACHD Lead and on the Illinois Chapter Board. She also serves on the steering committee of Chicagoland Cardiac Connections, an organization that provides support and resources for patients with cardiac devices, based out of Lurie Children’s Chicago.


Somewhere to Turn

For the last week of February, we will hear from Rita Higgins, a heart mom, who shares her story and recognizes the role that the PCHA plays in a heart family’s life.

It was the first time that I saw my husband really cry. I can still hear his voice crackle with joy and love. I can still smell her hair as I held her in my arms for the first time and see her delicate brown skin and marble black eyes. The day that Trinity was born, I envisioned the perfectly laid out plan of her going from baby, to toddler, to child, to adolescent, to young woman. I had done everything the books told me to, and in return for staying away from alcohol, eating my vegetables, taking my prenatal vitamins, and exercising, I expected a healthy baby, that I would take to a primary care doctor for well child checkups and maybe the occasional ear infection.

“She seems so skinny, and she breathes really fast.” Those words will forever echo in my head. They were the first words I used to try and describe my feelings of unease about Trinity. She was only a week old, but my gut told me something wasn’t right. It told me that she wasn’t supposed to look like she was running a marathon when I tried to breast feed her, that she should have more “baby fat,” and that even though I knew babies slept a lot, she seemed to sleep excessively.

“First-time mothers worry a lot. Are you sure you are feeding her appropriately?” Those words will also forever echo in my head. They were the first words used to brush off my concerns. They were the first words uttered towards me by a health care professional that would make me question if what I felt and what I saw was real or not. “Maybe I am just a worried mom who doesn’t know anything about babies,” I thought to myself. “What do I know? They went to medical school and are smarter than me. I should have never said anything.” I started to wonder if maybe I hadn’t listened enough to the lactation consultant. Maybe I wasn’t breastfeeding her right, maybe something was wrong with my milk, and she wasn’t getting enough, maybe I should just put her on formula, maybe I’m not cut out for this…

A couple weeks later I returned to the doctor’s office for a routine checkup. “I hear a heart murmur, and you need to go see a cardiologist at Children’s Hospital of Wisconsin,” she said to me with a look that I didn’t recognize. Confusion, anger, and fear rushed through my body. I wanted to scream, and cry, and storm out while giving the doctor a piece of my mind. It was Trinity’s two-month checkup, and the day was supposed to consist of me taking Trinity to the doctor, holding her for an immunization or two, and going home to enjoy my last couple of days of maternity leave. Instead I couldn’t even figure out how I was going to drive home without breaking down. I was by myself, because after all, it was supposed to be a routine appointment. I drove home with so much guilt and shame that day. I looked my baby in the eyes and apologized to her for not pressing the doctor when my concerns were not taken seriously, for not fighting for her and taking her to a different doctor, and for doubting myself and my ability to know that something was wrong all along.

“She has what we call ventricular septal defects, or VSDs. Hers is on the severe side because there are a lot of holes. Think of a piece of swiss cheese. That’s why sometimes we call what she has ‘swiss cheese’ VSDs. We will start her on some medicine, but she will need surgery at some point to fix it.” These were the words that I heard at the Herma Heart Institute. Television static is the only way I can describe what engulfed me at that moment. I couldn’t think, I couldn’t hear, I couldn’t move. I even wondered if I was in one of those real-life type of dreams that I had sometimes, and I just needed to channel myself to a different dream. This couldn’t be real. I had done everything right, I had been told not to worry, and yet here I was listening to the most searing words that I had ever heard. Up until that point in my life, the only night I had ever stayed in a hospital was for child birth. I had never heard of Children’s Hospital of Wisconsin. I didn’t even know that there were hospitals specifically for children. The only heart disease I had ever heard of was the type that older people get and is associated with heart attacks or strokes. I had never heard the term “congenital heart defect.” I didn’t even know what “congenital” meant. I felt lost and alone, and unsure of who I could trust. I had already failed her once, and I was terrified of failing her again. My job was to protect her and make decisions that were in her best interest. How could I do that when I didn’t even know where to start?

Back in 2002, there wasn’t a PCHA to help me navigate the uncertain waters. Trinity would eventually go on to have her first surgery in April of 2002, and her second in June of 2007. She suffered severe complications after her second surgery and ended up on ECMO (extracorporeal membrane oxygenation). The complications also damaged her mitral valve. Although she wasn’t born with a mitral valve issue, the damage was so severe that she had to have a third surgery in March of 2008 to attempt repair it. Looking back, I was so lucky that I lived in the same city that a top-ranked pediatric heart program is located. I had no idea that where she had surgery could affect her for the rest of her life. I didn’t know what questions to ask, what information I should be seeking out to compare, what pitfalls to avoid, or what proactive actions I should take. It’s scary to think of what was at stake, and worse yet, that I didn’t even know it at the time.

PCHA is an answer to so many things I wished I had back then. They provide somewhere to turn to get trusted facts, a guide to help understand what you may not know and what questions you should be asking, and support in the way of connecting you with people who have been on the journey. They have fought for transparency so that parents can understand the quality of surgical programs to make informed decisions on where their child should be treated. They have been a strong voice in moving legislation that helps fund research that benefits children with CHD from birth to adulthood. They even help spread awareness among health care professionals to ensure that patients are receiving care based on best practices. As I reflect on the loneliness I felt, the fog of confusion, and the things that were left to chance because I didn’t know any better at the time, I am so grateful that PCHA is here so that parents no longer must navigate those waters alone. 

Trinity is 17 now, and we look forward to using the guide that PCHA is developing to help teenagers transition into the adult CHD world (editor’s note: this resource is still in development). This is another area that PCHA is making an impact. As kids like Trinity grow up, it gives me comfort to know that PCHA is there to help her make decisions as an adult, to continue to help health care providers understand the needs of adult patients with CHD, and to continue to champion legislation that will protect her ability to receive quality care.

PCHA stands for Pediatric Congenital Heart Association, but for me, it also stands for People Championing Hope Always. Hope is a feeling of expectation and desire for something positive to happen; a feeling of trust. This is what knowing that PCHA is on our side gives to me, and to Trinity. It’s sometimes difficult for a parent to let go and allow their children to begin making their own decisions. For a parent of a child with a lifelong health issue, it can be that much more difficult. Thanks to PCHA, it’s not as scary as I used to imagine it would be.


Rita is heart mom, and mother of two girls. Her oldest daughter was born with CHD. She has a passion for bringing in the voice of the patient and family to healthcare, and has a high interest in health literacy. She currently serves on the Health Literacy Task Force at Children’s Hospital of Wisconsin. Rita had a career in business before deciding to return to school for nursing. She received her RN license in 2012, and worked for a pediatric hospital for 6 1/2 years. She currently works in clinical education for a medical device company. Outside of her professional life, Rita enjoys spending time with her husband and kids.  Favorite activities include biking, fishing, and watching her daughters’ sporting events, music performances, and drama productions. 

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.