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.

Father’s Day – Joe’s Dad

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

 

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

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

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

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

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

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

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

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

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

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

So, when I say:

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

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

 

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

 

Adult Patient Experiences – Scarred

Uncertainty and life challenges do not disappear with age. New phases of life, new experiences, instead,  bring different ones our way, as Medical Student, Joe Burns, knows. Here, he shares with us a shift that happened in his life, after surgery as an adult due to his CHD. His story emphasizes the importance of  support for patients through the lifespan and the role adult patients can play for transitioning patients.

“Did you have heart surgery?”

The shy seventeen-year-old girl’s question caught me completely off guard.

Her name was Sarah. Everything about her seemed perfectly organized–her long black braid falling ruler-straight between her shoulders, her folder with all of its documents sorted by date, her matching shoes and shirt, her entire wardrobe without a single wrinkle.

Her health was a bit less perfect. She’d been born with an atrial septal defect (ASD)–a hole in the wall separating the heart’s right and left chambers. Tomorrow she was to have an operation to repair the hole, so she’d come in today, accompanied by her parents and brother, to sign the presurgical consent forms.

Vivian, the nurse, had given Sarah informational materials about her condition and the operation. With an air of poised self-possession, Sarah had read everything, asked appropriate questions and completed the consent form. She seemed quite prepared for tomorrow’s procedure.

Meanwhile, I’d been standing silently in a corner. As a third-year medical student doing my surgery clerkship, I was here to observe the interview.

Up to this point, Sarah had directed her attention to Vivian. Now, as she peered at me over her glasses, awaiting my answer, I felt flustered–and keenly aware of the two inches of scar peeking out above the V-neck of my scrubs.

I hadn’t expected to talk with her, much less to divulge my health history. Still, I thought, it’s only fair to share it; she’s accepted my being here while her own health was discussed.

“Yes, I did,” I said. “I had surgery about two years ago to replace one of the valves in my heart.”

Her eyes widened, and her features softened into a smile. All at once, she seemed much younger.

She studied the top of my scar (which is nearly an inch wide and runs down to my breastbone), and her expression turned to one of concern. I could guess what she was thinking.

“Don’t worry,” I said. “Your incision won’t be as long as mine.”

Her parents chimed in.

“You’re in medical school? How was your recovery? How do you feel now?”

Answering their questions, I relived my two-month recovery period. As I’d worked to regain my strength and make the transition to medical school, I’d experienced a wide range of emotions, from wallowing self-pity to blazing triumph. Some days, I wanted nothing more than to sleep and be alone; others, I would run for miles. My prevailing thought throughout those months, though, was the loss of my privacy.

Up to that point in my life, my illness had been invisible to others. I’d checked in with my pediatric cardiologist every six months, but otherwise I felt normal.

After the operation, there was no longer any hiding: Wherever I went, my body broadcast my health history. I didn’t sign a release form permitting all of the stares I got at the beach or the pool; I didn’t consent to the uninvited queries, the pointing, the whispers–but nonetheless, they became a part of my life.

Talking with Sarah’s parents, I remembered, too, how stressful my own parents had found my surgery.

As anxious as her parents feel, I reflected, it must be comforting for them to see that she can look forward to a normal future.

In that moment, I became aware of what a strong bond Sarah’s question had forged between us. Having endured the countless echocardiograms, exercise stress tests, Holter monitors and EKGs that congenital heart disease (CHD) demands, we two shared a common experience and knowledge that no one else in the room could fully understand.

Soon, I reflected, she too will bear a physical reminder of her journey with CHD.

Throughout the rest of the visit, Sarah looked to me, literally, to confirm the information Vivian was giving her. It was as though my personal experience meant more to her than any medical data, however reliable.

When Vivian said, “The day after your procedure, you’ll be able to stand up and walk around,” Sarah glanced at me, and I nodded.

After several more of these silent consultations, Vivian actively involved me in the conversation.

“After you go home, you’ll be able to do everything you normally would, but it will take time to regain your stamina,” she said. “Joe, would you agree?”

“I agree completely. If you commit to your rehabilitation, you’ll feel better than ever after only a few weeks,” I answered, marveling at how my experiences of patienthood and vulnerability were empowering me to play an active role as Sarah’s caregiver.

The visit drew to a close, and the family prepared to go; we all shook hands. Sarah was the last to leave. Reaching up, she put her arms around my neck and hugged me.

“Thank you so much for being here today,” she whispered.

I feel grateful to have had the chance to share my story with Sarah. Our encounter reminded me that it’s not only pharmacology and procedures that make a difference in medicine; it’s also the relationships we forge during our struggles, and the bonds we share with those who are traveling similar roads.

I realize that my scar will always be a part of my identity as a physician and healer. It’s a doorway to openness with my colleagues and patients. I can never aspire to the image of the all-powerful, invulnerable physician. My scar is my humanity. There’s no escaping it; the evidence is etched upon my body.

Joseph Burns is a medical student at the Herbert Wertheim College of Medicine at Florida International University, in Miami. A native of Orlando, he is passionate about the arts and community engagement. His interests include congenital heart disease and American Indian health, and he hopes to pursue a career in adult congenital cardiology. His writing has appeared in Reflective MedEd. “During my recovery from heart surgery in the summer of 2015, I realized the importance of reflection in my healing. Though there have been times in which I have felt embarrassed about my scar, more often than not it’s a badge of honor, of survival. It’s an open door for advocacy and for connection with those who have endured similar battles.”

This piece was was also published  at https://pulsevoices.org/index.php/pulse-stories/1293-scarred

Mother’s Day – Sarah’s Story

We don’t always celebrate Mother’s Day with a tangible gift. Sometimes the day serves as a reminder of the blessings that Motherhood is on its own. Below, Sarah shares her story about what Motherhood had taught her.

There are so many valuable life lessons I have learned in my 8.5 years as a mother.  Not only have I learned more than I ever imagined, I believe the discoveries are unique to each mother.  For instance, I have realized and been touched by various

events that may not impact some mothers as they do for others.  This is what I believe to be a special component of motherhood.

Mother’s Day has become even more special to me since the birth of our 22-month old heart warrior.  While every day is a joy with both of my children, Mother’s Day is an extra reminder of how fortunate and blessed to have two children I learn so much from on a regular basis.  I truly take no day for granted.  While our journey is full of uncertainty raising a heart child, I treasure every moment.

If I had known what I may have experienced when becoming a parent prior to motherhood, I may not have ever become a mother!  My life as a mother has been very eventful; both full of joys and many hardships – some of which many mothers never experience.  However, some of these difficult times, such as the diagnosis and journey with our son’s complex heart condition have made me a better and stronger mother and person.  I have since realized more so now than ever, what is important in life – what is needed and what can be lived without.  Less is truly more.

Motherhood, has blessed me in more ways than I could ever describe and even more so since I became a heart mom.  While the times in our journey have not always been good; they have led to where I am today and I am proud to have two loving, caring, courageous, and energetic boys who remind me what life is all about.

Each year, I look forward to Mother’s Day and am thankful I am a mother of two remarkable boys who remind me of how lucky I am, especially our little miracle child and warrior.  Motherhood has helped me grow as a person and professional, for which I am so grateful.

 

The author, Sarah Diamond, has a passion for the non-profit sector, working with volunteers, writing, and educating.  She holds a Doctor of Education in Educational Leadership and works in non-profit management.

In 2016, she partnered with two colleagues to form a non-profit, where she serves as the President and CEO of the organization, which helps families experiencing medical conditions.

She and her husband have two sons and enjoy spending time together outside doing many activities like riding horses, running, fishing, and gardening.

 

 

Mother’s Day – A Grieving Mother

Most of us spend Mother’s Day with our children, but for Kristin Burns, who lost her son to CHD, the day means something different. Read her story below. 

I remember the day that I become a part of the CHD community. It was August 18th, 2016. Since that day, my life has been changed forever. I have learned so much, and I have grown exponentially as a person. My first and only son, Brycen Alvin Burns, was diagnosed with CHD at 20 weeks gestation. From that day forward, he fought for his life every single day. Watching Brycen fight for his life, taught me so much as a mom and as a person. He taught me how to be strong, and how to fight with all my heart and never give up. He taught me how to be an advocate for him, and how to always trust a mother’s intuition, as its almost always right. He also taught me how to love with every ounce of my being, with the knowledge that life and death hang in the balance, and that every day we got with him was a gift. After 229 days here on Earth, Brycen was taken from us. He passed away as a result of complications from his heart defects and other medical issues. On July 29, 2017 I became a childless Mother, and the Mother of a Heart Angel. Being a childless Mother is not how I thought I would be spending Mother’s Day this year.

 

My first Mother’s Day was spent in the ICU at Children’s Hospital and Medical Center in Omaha. Brycen was recovering from 1 open-heart surgery, and 3 additional open chest surgeries, including a very risky tracheal reconstruction. Amid the humming of medication pumps, and the beeping monitors, we still celebrated the holiday. Brycen was battling withdrawals, but I was just so thankful that he was still here with us, that I didn’t care about the struggles. I remember trying to make the staple “First Mother’s Day” crafts with Brycen and my husband Jeremy. I remember laughing at how imperfectly perfect they were, and I remember thinking that there was always next year to make better ones. Little did I know what the future was going to have in store.

 

This year, everything is different. I no longer have the tangible and physical evidence that shows I am a mom. I will always be Brycen’s Mom, but now that he is no longer with me, it is hard to hold onto that identity. In fact, sometimes I like to go back to the hospital, because that is the only place that I am still referred to as Brycen’s Mom. But most times, I don’t even feel like a Mom anymore, because I don’t get to do the things that mom’s get to do. I don’t get to change diapers. I don’t get to play with my child. I don’t get to tell him to stop climbing on everything. I don’t get to do anything that mom’s get to do. Instead, I get to visit my son’s grave. I get to talk to him and call out to him in my prayers. And I get to tell people his story about how hard he fought from the day he was conceived, up until the day he passed away. These are the things that I get to do as a childless Mother on Mother’s Day.

 

Once you lose a child, the holidays are tough. Mother’s Day will be another “first holiday” without Brycen, and I can only imagine how difficult it will be. Social Media will be flooded with family pictures, pictures of beautiful flowers and of handmade gifts from children to their Mothers. And people will be posting about how great their Mother’s Day was. But then, there are loss moms like me. On Mother’s Day, we don’t get to wake up to any of that. Instead, everyday we wake up, we wake up to the same living nightmare that our child is gone, and we get to relive that moment, over and over again. And just like every other day after loss, we will wake up, put on our “faces” and put one foot in front of the other. This is our new world; because our “normal” died the day we lost our child. We have become experts at carrying our grief with us, each and every day. We have become experts at hiding our grief behind love and joy and even behind pain and sadness. We have had to become experts at this, because grief never goes away. Grief is forever, and lifelong, just like our love for our child. Grief is always there, but we just learn to push through it.

 

I personally have mixed emotions about Mother’s Day now. I find myself wondering if I should even be celebrated, as I no longer have my son with me physically. But then again, I am Brycen’s mom, and no one can ever take that away from me. I guess my wishes for Mother’s Day are simple, and they include all of the loss moms/bereaved moms in the world. Please don’t forget about us. Please don’t avoid us, and please don’t avoid saying our child’s name. They existed and will always be our children. But please don’t be offended if we distance ourselves for a little while to collect our emotions. Please be patient with us, and know that we are hurting. While we watch you play with and hug your children, our arms and our hearts are aching to hold our children just one more time. On Mother’s Day we will celebrate your joy with you, but we will be experiencing pain. A pain that is unimaginable. So please don’t forget about us.

 

To all of the mom’s that have lost a child, or multiple children, this is for you. This is to show you that you are not alone on Mother’s day, or any other day. We are all in this together. We are all members of this club that we never asked to be in. Just know that it’s okay, to not be okay. It’s okay to distance yourself, and to take time for you. Your loved ones will understand. Grieving mothers are some of the strongest women in the world, and so we celebrate you on Mother’s Day, and every other day! From one loss mom to another, I see you and I understand. Happy Mother’s Day!

 

 

 

Kristin Burns is a 30 year old Heart Angel Mom, from Council Bluffs, IA. She is a Physical Therapist Assistant and has been married to her husband Jeremy for 3 years. Their son Brycen was diagnosed in utero with several medical issues including Congenital Heart Defects. Due to Brycen missing his left lung, seeing his entire heart anatomy was difficult due to positioning, and they were given several different diagnoses. After his first open-heart surgery his full diagnosis was VSD, ASD, Overriding Aorta, Hypertrophic Right Ventricle, Double Aortic Arch and a Vascular Ring. Since becoming a part of the CHD community back in August of 2016, at Brycen’s first diagnosis, Kristin and her husband Jeremy have been strong advocates for CHD research and raising CHD awareness. With the help of another Heart Angel Mom, Kristin is helping start a non-profit organization to help other CHD families at the local Children’s Hospital and Medical Center in Omaha. They are also helping start support groups for inpatient families and also for bereaved families.

Beyond the Heart – Pediatric Pulmonary Complications

In a follow up to PCHA’s series on complications resulting from CHD, Dr. Nidhy Varghese, of Texas Children’s, adds insight to the pulmonary implications in patients affected by Congenital Heart Disease. 

 

Pediatric Pulmonary Complications of Congenital Heart Disease
Dr. Nidhy Varghese, pediatric pulmonologist at Texas Children’s

Congenital heart disease is the most common birth defect in the world, affecting the hearts of thousands of children each year. However, congenital heart disease (CHD) affects more than just the heart. Abnormal cardiac development can have significant effects on other organ systems such as the lungs. The lungs are directly connected to the heart and they share a unique relationship of development and physiology. Effects of CHD can be seen in lung growth, in anatomy and in lung function. Although these can be considered as prenatal and postnatal consequences, the pulmonary complications of congenital heart disease represent a spectrum of consequences.

What is the function of the lungs?

The lungs are the gas exchanger for the body. A multilevel organization of airways present oxygen and remove carbon dioxide through contact with a rich network of blood vessels in the lungs. The lungs are connected to the heart through the pulmonary artery and the pulmonary veins. They’re located in the chest, on the sides of heart.

Prenatal Effects

The lungs are made up of conducting airways, air sacs (known as alveoli) and blood vessels.  These structures begin to form by the end of the first month of embryonic development.  The development of the vascular system within the lungs and the branching of alveoli are directly related to circulation.  Abnormalities in blood flow due to CHD can cause alterations in development of the lungs’ vascular system (arteries, capillaries and veins) and the division of the airspaces into the millions of alveoli needed for adequate gas exchange. This results in simplification of the alveolar and vascular networks, which can produce symptoms of chronic lung disease and pulmonary hypertension.

Postnatal Effects

In the setting of CHD, the flow of blood within the heart and through the blood vessels is abnormal.  Different parts of the heart or the blood vessels themselves may become enlarged or may be atypically located within the chest, causing compression on the nearby lungs and airways. CHD examples in which this can be seen are anomalous innominate artery and conditions causing cardiomegaly (an enlarged heart). Compression can cause respiratory distress, stridor, wheezing and recurrent areas of lung collapse.

In certain types of CHD, there may be increased blood flow to/through the lungs (for example, patent ductus arteriosus, ventricular septal defect).  The arterial system in the lungs is not used to receiving such large amounts of blood flow.  Subsequently, the pulmonary blood vessels can become scarred and narrowed. While this effectively reduces the flow through the lungs, the pressure in the lungs can increase: a condition known as pulmonary hypertension.

Pulmonary edema is another complication of CHD. This is a condition in which high blood pressure occurs in the vessels close to the alveoli. As the pressure rises, water diffuses from the blood into the airspaces. The effect on gas exchange can be variable. Pulmonary edema is more likely in conditions such as pulmonary vein stenosis and mitral valve abnormalities.

In summary, CHD can cause many abnormalities in the lungs.  The respiratory system in children with CHD is more likely to be simplified which may affect gas exchange.  Certain types of CHD can cause further symptoms such as airway compression, pulmonary hypertension and pulmonary edema.  Pulmonary complications in children with CHD are part of a spectrum and can vary significantly in each child. It is therefore important that children with CHD undergo respiratory assessment for early detection of these consequences.

 

As a pediatric pulmonologist, Dr. Nidhy P. Varghese’s specific area of interest is pulmonary hypertension and pulmonary complications of sickle cell disease. She enjoys working closely with families and colleagues to deliver the best care possible to care for children, so that they may thrive. She earned her medical degree from Albany Medical College, completed her pediatrics residency at New York University School of Medicine and her pediatric pulmonary fellowship at Baylor College of Medicine.

Mother’s Day – A Mother’s Day Gift

Mother’s Day is a day to shower the women that have loved us  and cared for us with gifts in appreciation!  We bring them flowers and homemade cards, in hopes of bringing a smile to their faces. But last Mother’s Day, Melissa  Zolk  received a very different kind of gift, one that changed her daughter, Maxine’s life.  

 

 

Mother’s Day – Those two words hold a meaning unlike any other, especially if you are a heart mama.  To a heart mama, they mean countless doctor’s appointments, medications, syringes, feeding tubes, therapies, hospital stays, and surgeries.  They mean finding strength in moments when you thought you had none left.  However, they also mean understanding differences and embracing the beauty that comes with those differences.  The beauty of zipper scar lining your child’s chest.  They mean understanding true joy because you have experienced true sorrow.  The sorrow that began the moment you heard, “There’s something wrong with your baby’s heart!”  Those words start a journey filled with the unknown.  And little did we know what our journey would be like with our heart warrior.  We received the devastating news at our 20 week ultrasound and from that point on, our journey took the path unexpected.  Though now as a more experienced heart mama, I know that the unexpected is to be expected.  Our daughter, Maxine, was born on October 1, 2015 with Transposition of the Great Arteries, Pulmonary Stenosis, and Ventricular Septal Defect.  She had three heart surgeries including one open heart surgery before she turned one year old.

 

For me, Mother’s Day has even more meaning now.  It still means medications, appointments, procedures, and worry, but it also means the GIFT OF LIFE.  Last year on Mother’s Day, we received the call that changed our world – after living in the hospital and being listed for 137 days on the heart transplant list, Maxine was getting her new heart!  Oh, how the emotions came flowing.  Flowing free and fast and yet again, unexpected.  I think the most unexpected feeling was the peace that I had.  Yes, I was nervous and scared and worried and excited, but a feeling of peace came over me and lingered for a while.  Sometimes, I wonder if maybe the reason I felt so at peace was because maybe the family who chose to give us this incredible gift in their time of incredible grief felt more at peace knowing that part of their child would live on within my child.  Mother’s Day means my child received the greatest blessing, a second chance at life.  It means that this year I get to celebrate at home with my husband and our three beautiful children.  And on this Mother’s Day and every day to come, I promise to remember the mama whose heart is breaking because she lost her child last Mother’s Day.  A day she will remember for a completely different reason than the reason I get to remember.

 

To my fellow heart mamas and all mamas, Happy Mother’s Day!  Whether you are celebrating with your child here on Earth or your angel up in Heaven, I want you to know that I promise not to forget you and the amazingness you are as a mother.  You were created to be the perfect mama for your baby and you are exactly what your baby needs.  My hope is that you can remember that when the days are long and difficult because life will take unexpected turns and we will be there to help our babies get through it!  Because, well, we are mamas and that is what we do!

 

 

 

 

 

Hi there!  I am Melissa.  Mama of three crazy, beautiful children, ages 3 and under and wife to the most amazing heart daddy on the planet.  Our middle child is our heart warrior, and she is an energetic little stinker!  Besides being a heart mama, I am a high school, special education teacher.  In my free time, I like to make phone calls to doctors, pharmacies, and insurance companies. Ha, just kidding!  Our heart warrior has been on quite the journey these last few years.  If you would like to follow her journey, you can find her at Maxine the Mighty Heart Warrior on Facebook.

Mother’s Day – Love, Brett

With Mother’s Day on the horizon, PCHA begins a series honoring Heart Moms. This week, Brett Nishibayashi shares a letter to his wife about their journey becoming CHD parents and his admiration for her love and strength.

I remember when you first found out you were going to be a mother. The disbelief and overwhelming excitement all at a bubbling intensity was paralyzing. Unsure of what true emotion to feel, we embraced one another and leaned on our unconditional love and faith to guide us through. It’s ironic that these same pillars of our relationship are what we would need to rest on heavily sooner than later. Unfortunately we weren’t able to bask in the joys of pregnancy for long because we were given a different journey. Your path has never truly been the “normal” path and you have never been granted an opportunity to be a “normal” mother. You are far beyond the normal in all you do and motherhood is no exception. You are always perceptive and aware, constantly observing and analyzing, but even with those admirable qualities, nobody could predict your true calling.

I vividly remember when you first found out you were going to be a heart mother.  I remember the anxiety of the ultrasound. I remember the tremble in your hand. I remember the tears in your eyes. The car ride home, the vulnerability and the confusion of how this could be our story all resonate deeply in my soul. I mention these moments because they are the last days that I remember of the woman I met and married. From that point on you evolved into the new and improved version of that woman and I am still amazed at that transformation daily.

Since that moment, until long after you read this, you have been a fierce advocate and a perfect example of a nurturing and invested mother. Inspiring doesn’t begin to encapsulate the way you attacked this diagnosis and all of the pertinent information that comes along with it. You immersed yourself in the CHD community learning as much as you could about Avery’s condition, its pitfalls and how we were going to mitigate its effects as best we could. None of this was easy as we stared in the face of the “what ifs” that lurked in our minds. The uncertainty of it all can leave you searching for more and more information, which once obtained, doesn’t necessarily subside the fear and anxiety of the imminent future.

I mention all of this because I want you to know that I see you. I see you hurdling these obstacles as they are thrown at you with intent and grace. I see you losing sleep and how it chips away but still finding the energy to flash a refreshing smile and hearty laugh. I see you trying to be the best mother, wife, therapist, cardiologist, activist, pre-school teacher and I’m sure many more things that you can be.  I see you trying to remain perfect in an imperfect world and it inspires me. I see how hard you push yourself but more importantly I understand why. I see you reaching out to help other heart families, recognizing that we are part of a larger community of heart parents.

I see this and so much more when I look at you. You are the perfect mother for the perfect little girl and I am truly the lucky one. The other day I mentioned to you how I really thought you were an outstanding mother and you looked back at me with disbelief. Let me assure you that there should never be a single doubt in your mind on whether or not you are a great mother. Your love, compassion, attentiveness, patience and drive are unquestionably why our family enjoys so much happiness. I want you to know that you should always be confident of how well you are doing EVERYTHING. You deserve every blessing you receive and all those that are still to come. I wish you calm and peace on this your third heart mother’s day. May the serenity you deserve be all that you need it to be. I will  always see you because I can’t take my eyes off of you.

Love Brett

 

 

Brett Nshibayashi is a 39 year old heart father from Chicago, IL. He is a high school PE teacher and has been married to his wonderful wife for 3 years. Brett considers himself honored to be a part of this community of heart parents.

Beyond the Heart – Nauman’s Story

Adult patient and medical student, Nauman Shahid, shares what he learned about the way different body systems interact with one another through Medical School and personal experience. Here, he shares the complications that developed with his lungs as a result of his Congenital Heart Disease.

 

When we think “Congenital Heart Defect” we often think about the “heart” and only the heart, but as someone who attends an Osteopathic Medical School, Ive come to realize that this is only the tip of the iceberg in the realm of CHDs. One of the tenants of the Osteopathic medicine philosophy happens to be in how the body is a unit as described by the founding father Dr. Andrew Still. Within this unit lie different organ systems that work in sync to create a balance of homeostasis. Its when we have a disturbance in this “homeostasis” is when we have a diseased state that may often require medical intervention in addition to the body’s own ability to self regulate. In this short piece, I will attempt to introduce one piece of this unit at the organ level to facilitate the understanding in how a Congenital Heart Defect is much more than just the “heart” with a focus on respiratory/pulmonary ailments.

Nauman with Representative Gus Bilirakis at the Legislative Conference in Washington D.C.

Having Tetralogy of Fallot diagnosed at a very young age, my parents were often told of the potential respiratory issues that may arise during the course of my life. As such, many Tetralogy of Fallot patients often require a pulmonary valve replacement by virtue of the initial repair surgery in which the pulmonary valve is disrupted. Coupled this with having a stenotic left pulmonary artery, this substantially increased my right sided heart pressures and decreased the blood flow to the lungs in general due to having pulmonary artery hypertension. Overtime this can cause issues in the long run as it did for me. As a result, during times of strenuous exercise or any activity in which it increased the heart rate, I would find a great amount of shortness of breathe coupled with lower extremity edema. This can be thought to have similar implications as an infant having a crying “TET” spell. This often occurred as a result of the lungs not receiving adequate amounts of blood. This resulted in a back up of blood in reverse all the way down to the lower extremities. A way to think about this is, imagine having a backup of water in your sink due to having a faulty water sink disposer. The water will continually collect unless the core of the issue is resolved. In which case, for me, was a faulty pulmonary valve coupled with a stenotic left pulmonary artery which caused respiratory issues.

You might be asking, “how does all of this relate to a pulmonary issue”? To answer this, we need to first define pulmonary artery hypertension, in which it is a condition where the blood pressures are increased within the arteries of the lungs. Pulmonary Hypertension is a broad spectrum term which has 5 distinct groups of etiologies as defined by the World Health Organization. In my case, having a stenosis of the left pulmonary artery increased the pressure and caused a back up of blood which in turn causes the heart to work harder. It should be noted that normal pressures for the pulmonary artery are usually below 20 mmHg. However if this pressure rises to above 25 mmHg during rest, it is by definition pulmonary artery hypertension. It is very sensitive to minute changes in pressure and hence why the right side of the heart that leads into the lungs is called the “low pressure system”.

For me as the patient, it caused a number of different issues. I often had increased exercise fatigue, shortness of breath when playing sports, and palpitations. Being in medical school, it did not help me where I would sit for long durations of time. During this time, I got a bit ill and developed pneumonia. I had repeated trips to the emergency room near my medical school. As a result, many of the ER doctors I saw were obviously not trained enough in the realm of dealing with congenital heart defects and were also confused when administering certain acute therapies including nebulizers and other respiratory treatments with a probable focus on it being a pneumonia infection. Additionally asthma was also likely present as well with the larger issue ofcourse was dealing with these EKG changes that got many doctors confused. When I initially started to get palpitations, and shortness of breath, I used to think the acute altitude changes were a contributing factor since my medical school is a bit higher in elevation in rural West Virginia. While that may also have contributed to my symptoms, it ofcourse was not the entire story. During this time, I remember my mother telling me all the time, “Nauman, your heart is telling you something, you should listen to it”. As they say, mothers are never wrong, and rightly so. The exercise fatigue, shortness of breath ended up being much more than just asthma or pneumonia alone. Finally, I got to see a Cardiologist after narrowing down that it was likely my heart that was acting up which was now affecting my lungs as well. It was only with my Cardiologist in New Jersey did I learn about the gravity of the situation and the likely intervention required.

The million-dollar question? How do you fix this? Well thankfully with the advancement of congenital heart medical care, patients with similar presentations have a multitude of options including surgical and medicinal therapeutic interventions. Initially I went in for a catherization at Cincinnati Children’s Hospital to replace my pulmonary valve via a transcatheter procedure. However, the diameter of the Right Ventricular Outflow Tract (RVOT) was simply too large as a result of a slightly dilated heart making the transcatheter procedure a non-viable option. This rendered open heart surgical intervention as the only choice which came as a blessing in disguise. Under the careful direction and precision of my surgeon at Cincinnati Children’s Hospital, they not only replaced my pulmonary valve, but repaired my left pulmonary artery,
reconstructed my RVOT, and repaired a hole in the septal leaflet of my tricuspid valve which came about as a result of my severe pulmonary valve regurgitation.

The take home message? Depending on the complexities of your congenital heart defect, it is imperative to understand that no two CHD’s will be identical with a varying degree of severity. With this, it is important to note that as in my case, it is not just about the heart in a localized fashion. This was just one example in how something as simple as 3 pieces of tissue coming together to make a valve that open and close due to pressure differentials can cause such a dramatic effect. This being, lower extremity edema, increased right heart sided/pulmonary pressures, shortness of breath and ultimately damaging the heart to a point of no return effecting the systolic (pumping function) of the heart. Furthermore, the artery connecting the right ventricle and the pulmonary trunk may get stenotic to where one may have higher pulmonary pressures and thus have pulmonary hypertension. For this reason, it is imperative to understand the human body as a unit of different organ systems working in concert to achieve the process we so often taking for granted known as life. By addressing the core etiology that disrupts our homeostasis you can address each component collectively and individually which in my case was the dysfunction between the circulatory (heart) and respiratory systems (lungs).

I never really knew how much these issues were effecting me until I got treatment. Although my recovery from open heart surgery was anything but normal due to having pleuritis and other issues, I have come out well. In fact aside from my ability to return back to my fitness regimen, I noticed a great increase in my intellectual capacity to where I have been ranked in the top tier of my medical school class as I am no longer fatigued or tired during the rigors of medical school. While I know, many of my fellow heart warriors are not looking forward to a possible surgical intervention, I can safely say everything indeed happens for a reason. If it wasn’t for my pneumonia, they may not have ever picked up on my EKG changes. As my mother said it best, “Listen to your heart, its telling you something”, and finally my heart is content with this outcome because while I may not be where I want to be, I am simply glad I am not where I used to be.

Nauman Shahid is a 31 year old Tetralogy of Fallot Patient who is well known in the congenital heart community as a regular contributor on various social media platforms. He is involved in various congenital heart awareness initiatives including being a Hearts Unite the Globe (HUG Network) Volunteer as a Guest Host for their CHD radio show (Heart to Heart with Anna), Chief Operations Officer/Board Member for the Tetralogy of Fallot Foundation, recipient of the PCHA Scholarship to attend the 2018 Congenital Heart Legislative Conference in Washington DC where he met lawmakers to advocate for H.R. 1222 (Congenital Heart Futures Reauthorization Act of 2017), and selected for the 2018 PCHA Calendar for the month of November. However one of his strongest contributions comes as a result of him being a dedicated medical student where he lead an awareness campaign on campus during Congenital Heart Awareness week on Feb 9, 2018 where he along with a few dedicated classmates distributed purple ribbons along with relevant literature in an effort to inform the next generation of breeding physicians about CHDs. When Nauman is not studying, he is often found to either be boxing in the gym, BBQ/cooking some of his favorite foods, touching base with fellow heart warriors and their families to lift their spirits or resting up listening to his favorite soft rock tracks. Nauman will be attending a 2 week clinical internship at Cincinnati Children’s Hospital’s Heart Institute to observe the various complexities of cardiac ailments in the clinic and surgery. He has earned a Bachelors of Science in Biology and a Masters of Public Health (Honors) with a focus on Health Policy. He attributes much of his success to his family and aspires to help heart warriors with congenital heart defects as a future physician.