Mental Health – Brittany’s Story, Living with PTSD

An often unspoken topic with members of the CHD community is PTSD. For the first piece in our Mental Health Series, Brittany Foster, born with a VSD as well as other conditions, shares her experience with the illness, and how it has affected her life and her perspective.

 

 

“Doesn’t matter how tough we are, trauma always leaves a scar. It follows us home, it changes our lives, trauma messes everybody up, but maybe that’s the point. All the pain and the fear. Maybe going through all of that is what keeps us moving forward. It’s what pushes us. Maybe we have to get a little messed up, before we can step up.” Alex Karev, Grey’s Anatomy

 

For the last 26 years of my life I have experienced trauma.  Those of us living with CHD have been through more traumas than we can count. According to the National Childhood Traumatic Stress Network, there is a specific type of trauma called medical trauma. Their definition states, “medical traumatic stress refers to a set of psychological and physiological responses of children and their families to pain, injury, serious illness, medical procedures, and invasive or frightening treatment experiences. These responses may include symptoms of arousal, re-experiencing, and / or avoidance. They may vary in intensity, are related to the subjective experience of the event, and can become disruptive to functioning.” The last five years that I have spent going to talk therapy, either once or twice a week, has helped me reflect on my traumas. Therapy has helped me to realize just how deep rooted a lot of my fears, insecurities, and worries are. My stress reactions may seem over the top and hard to explain. How can I possibly cry for hours over something that seems so simple? How can I sit there shaking at the smallest amount of pain but can endure more severe pain through my surgeries? What may seem like an exaggerated reaction to people observing my behavior, is actually a response due to post traumatic stress.

PTSD took many different forms throughout my childhood. I always had a constant fear of my sisters being kidnapped or going missing. For the majority of my childhood from age 6 to 12 I would cry my eyes out when I lost sight of them. “Mom, you were supposed to be watching them!” “Where are they!?” “They are gone.  Someone took them.  They drowned in the ocean.” I recall being terrified at sleepovers and crying to go home because I wasn’t around to watch them.

Reflecting on this time in my life, I am now more aware of exactly why I felt this way. Realizing why you feel a certain way really helps you make sense of how exactly to manage this type of traumatic stress reaction. Just treating the anxiety won’t make it go away and just labeling my behavior as “anxiety” didn’t help me. This “on edge” or “on guard” behavior was because I had a general lack of trust in the outside world. When I was younger I felt as though I was the only one who could protect them. Everyone else, including my parents, were not good enough to watch them. My deepest fear of my sisters being taken from me was directly tied to those who were a huge part of my life who hurt me. I didn’t realize when I was younger that even though the surgeries and procedures hurt, it didn’t mean these surgeons, doctors, and nurses were bad people. I didn’t realize that just because my parents had to leave at a certain point before surgery or during a test, it didn’t mean they weren’t able to protect me. It didn’t mean they were not competent enough parents to know where my siblings were. This lack of trust carried over into relationships as I got older but never was as extreme as the days I didn’t trust anybody to be around my family and me.

Anxieties as I got to junior high and high school became something different for me. I developed obsessions over things I never obsessed over before. My thoughts revolved around being a perfectionist in school. As soon as I had a project, I needed to get it done that day, or I would obsess over it. I needed to memorize every single thing on a page of notes in order to get an A on the test.  When taking the test I would convince myself that I failed. I thought of the worst possible outcome. This was my way of dealing with the bad news that I received over the years at appointments. It gave me something else to focus on. If I prepared for the worst, it wouldn’t seem as bad when the worst happened.

At age 17, this stress and anxiety turned inward. All that was building up over the years, I took out on my own body. I convinced myself I would be able to “cure myself” of all symptoms and struggles, if I just lost some weight and exercised. I became obsessed with this thought. At the time, it was a great distraction from all the physical and mental pain I so badly wanted to ignore. This obsession turned into an eating disorder. I lost 30 pounds in a matter of six months. I struggled through anorexia, bulimia, binge eating, and over exercising. My body image was terrible. I disliked my body for as long as I could remember. I found flaws practically every time I looked in the mirror, even at a young age.

My traumas from chronic illness and the pain, both mental and physical, left me with deep rooted emotional scars. In my 26 years of life, I have managed anxiety, PTSD, body image distortion, addiction in the form of eating disorders, depression, and self-harm. It is so easy for many outsiders to think “you have overcome so much, you should be thankful you are still here.” It is easy for people to think “why would you do that to yourself after everything you have overcome?” The truth is that, what I have so courageously overcome is the very thing that has triggered my emotional responses. I didn’t know how to talk about what I was feeling inside. I didn’t know how to express my fears of hospitals, lack of trust in people, lack of trust and hate for my own body. Now that I have a therapist, I can see just how important they are for anyone who has gone through trauma.

All of the emotions I have now, I choose to feel. I feel the positive emotions and celebrate happiness; I feel negative emotions and allow myself to cry, scream, get angry, and feel the frustration.  I allow myself to feel physical pain and no longer hide under the mask of “I’m fine”. The most important thing to remember is that it’s okay for your children, or you as a CHD warrior, to feel everything so fully.  Emotions are difficult.  Depression, anxiety, and addictions are sensitive topics but they need to be discussed. Use the voice you have. Spread awareness. Trauma leaves scars, both visible and invisible.  The visible ones I’m sure start conversation all the time. Don’t be ashamed to talk about the invisible ones too, that’s how the real healing happens.

 

 

 

 

Brittany Foster is from Cranston, Rhode Island. She enjoys writing, blogging, reading, and spending time with friends and family. Brittany is also passionate about advocating for herself and others. Over her 26 years of life, she has learned to live fully with her conditions. Brittany has learned the importance of acceptance and self advocacy, and she hopes to spread some much needed CHD awareness.  Brittany was born with a large VSD that caused pulmonary hypertension, as well as vascular anomalies, including a right sided aorta, aberrant and isolated subclavian artery, and a form of a vascular ring.  She has had open heart surgery, a vascular bypass surgery for subclavian steal syndrome, multiple heart caths and attempted ablations. Brittany also has a dual chamber pacemaker for sinus node disease/ tachy brady/ ventricular dyssynchrony. She is on full time oxygen therapy due to a genetic mutation that caused the structure of her blood vessels to be too small. Her motto in life is to keep tickin’ through it all! Brittany hopes you can do the same, no matter what life throws your way!

Patient Engagement Tools: Comprehensive Single Ventricle Roadmap

When a family learns their child will be born with a Single Ventricle CHD, they are thrust into a world of uncertainty. It is sure to be a daunting and overwhelming experience. The plan for care of these patients has not typically been clear. As outcomes have improved, providers have been able to imrove their plans of action. In PCHA’s first Patient Engagement Tools Series post, Michelle Steltzer, Nurse Practitioner from Lurie Children’s Chicago, shares their Single Ventricle Roadmap.

 

Patient Engagement Tools: Comprehensive Single Ventricle Roadmap

Congenital Heart Disease (CHD) impacts about 40,000 newborns a year in the United States. Single ventricle defects are a complex subgroup of CHD, affecting approximately 5 out of every 100,000 newborns. In addition to normal pediatric and adult primary care needs, these patients are impacted by frequent follow up, complex testing, screening, re-interventions, surgeries, consulting providers, and care throughout a lifetime. This care not only impacts the patients, but the entire family system, including siblings, parents, grandparents, and extended family. The Comprehensive Single Ventricle Roadmap is a novel idea stemming from the persistent questions families have brought forward trying to understand the process of single ventricle disease over time and its neurodevelopmental effects.

Speaking from my personal experience as a younger sibling of a single ventricle patient, this kind of guide has been desperately needed for many decades. The first “blue babies” were given options for a better quality of life, and as research and outcomes have improved, these patients are now living into adulthood. Since arriving at Lurie Children’s Hospital in 2016, I am pleased to see the transformation of the idea evolve so promptly into a formal patient engagement strategy (available in English and Spanish) under the guidance of our entire team. I am specifically incredibly grateful to Dr. Kiona Allen and Amelia Aiello who agreed with this vision, making it a reality for patients and families.

Fontan Roadmap

https://www.luriechildrens.org/en-us/care-services/specialties-services/heart-center/programs/single-ventricle-center-excellence/Pages/single-ventricle-roadmap.aspx

Guiding Families Through the Journey

Now that you have been introduced to the roadmap, imagine yourself learning about the diagnosis of single ventricle CHD prenatally. The typical excitement and thrill of learning you are on a road to being a parent of a healthy new baby is not the same joy for parents and families faced with an incurable single ventricle disease. The stops along that road and the topics you’ll discuss are critical, important, costly, and personal. The unknowns, outcomes, and trajectory of this road trip are overwhelming to comprehend. Emotions and fears are often high, breaking down the normal anticipatory excitement and joy.

The Comprehensive Single Ventricle Roadmap is not a pathway any parent eagerly seeks out; yet, it is essential to living life with single ventricle disease. It requires thoughtful planning in an already busy family life schedule to organize the daily care that must be performed seamlessly within the diagnosis and treatment of single ventricle disease. This population is only several decades old; thus, the unknowns within single ventricle care are many. Investigating the latest research outcomes is an essential part of the journey — this includes understanding and coping with the lack of care options. Medical science and care have often not evolved fast enough to benefit children with single ventricle disease. Discussions with families about the surgical and other milestones on the journey are not easy conversations. The unique framework of the roadmap provides a visual guide, allowing families a way to understand the disease process. It also allows for valuable transparent discussions about opportunities for positive coping, hope, and fostering resilience along individual family’s pathway.

The Roadmap is not a “cookie cutter” framework meant to fit every family’s story completely; no two patients (and families) will have the same journey. However, it helps families visualize and more fully understand what care throughout a lifetime looks like, and allows families to anticipate major milestones in a specific time span of a child’s life, such as the newborn surgery. Identifying this point in time allows for transitional discussions regarding navigation in and out of acute and chronic care. These conversations often raise questions about the acute issues currently present for the patient and allow opportunities to explain our other patient engagement tools. For more helpful tools follow: https://www.luriechildrens.org/en-us/care-services/specialties-services/heart-center/programs/single-ventricle-center-excellence/Pages/home-monitoring-program.aspx

Typical questions from families during the newborn surgery period include:

  1. How will I be able to care for my newborn after surgery?
  2. What is home surveillance monitoring and will I be able to breastfeed?
  3. What if I need to go to the ER or another health care provider?
  4. What does follow up look like in the HeArT clinic (High Acuity Transition Clinic) and the pre-Glenn visit?

Not all stop points are anticipated. A couple examples of unplanned cardiac triggers across a lifespan include a 12-month-old s/p Glenn with moderate to severe AV valve regurgitation failing to thrive on medical therapy. Because of the cardiac issues, this patient moves into the blue circle entitled additional procedures. This may include potential re-operation for valve concerns before the anticipated next surgery in the journey, the Fontan operation. A second example is a 15-year-old s/p Fontan with arrhythmias requiring placement of a pacemaker/AICD that moves into the additional procedures post-Fontan for arrhythmias not responsive to medical management. Lastly, a 40-year-old s/p Fontan with failing function requiring listing for transplant that moves into the additional procedures post-Fontan and in essence trades one disease state for another (single ventricle physiology for transplant).

Striving for Anticipatory Guidance and a Successful Transition to Adult Care

One goal of the roadmap is to provide cardiac anticipatory guidance for families on the normal developmental milestones in life (marked by schoolhouses and graduation caps) and indicates the need for continued cardiac neurodevelopmental screening. The roadmap creates a framework to discuss difficult topics, potential complications, disease trajectory, issues that develop because of single ventricle physiology, and new cardiac concerns. When new issues develop that require attention, we have open conversations with the family that outline goals, medical options, surgical palliation and outcome statistics. Included in the conversation is a diagnosis review utilizing images that are tailored to the child’s individual anatomy to explain the current anatomy and potential next phase of the child’s journey.

The second goal of the Comprehensive Single Ventricle Roadmap is to foster developmentally appropriate health-promoting behaviors as our patients transition to adulthood to enhance the longer term quality of life. In the early-late teen and adult years, decision-making shifts from primarily parent-driven to patient-driven. This can be challenging for all involved. The milestones on the roadmap visually guide patients and families along the valuable process of each child’s maturation, identifies opportunities for transition of care from parents to patients, and highlights ongoing surveillance monitoring of the many consequences of Fontan physiology to achieve the ideal outcome with the best quality of life. This process is individual for each patient and evolves over time. Success is achieved when coordinated, developmentally appropriate, and psychological supportive care creates patients that advocate for themselves in adulthood and maintain the most positive health promoting behaviors in lifeTo see more on developmental Milestones follow: https://www.luriechildrens.org/en-us/care-services/specialties-services/heart-center/programs/single-ventricle-center-excellence/Documents/developmental-milestones.pdf

Lurie Children’s Hospital has a creative way of facilitating this transition within the Single Ventricle Program. The pediatric single ventricle clinic overlaps monthly with the single ventricle adults being seen in the Adult Congenital Heart Disease (ACHD) program. This allows for collaboration, a slower transition, and a formal hand off of care over time instead of a more rigid fixed timeline. To learn more on our website, follow: https://www.luriechildrens.org/en-us/care-services/specialties-services/heart-center/programs/single-ventricle-center-excellence/Pages/index.aspx

 

 

Michelle Steltzer has 20 years of nursing experience in fields from oncology to pediatric cardiology. She received both her bachelor and master’s degrees in nursing from the Univeristy of Wisconsin-Madison.

Michelle had a critical role in the development of the first home surveillance monitoring program for pediatric cardiology patients way back in 1999. She then worked collaboratively with the Joint Council on Congenital Heart Disease Quality Initiative while employed in Boston. Michelle expanded feeding protocols within congenital heart disease to include breastfeeding.

In addition to having worked at Boston Children’s Hospital and Children’s Hospital of Wisconsin, Michelle now works as a pediatric nurse practitioner at Ann & Robert H. Lurie Children’s Hospital of Chicago. Growing up with a sibling with a CHD, Michelle learned by experience and by watching her mother just what services were lacking for CHD families.

 

A Hero in A Small Package

The ending of June brings one more Heart Dad story. Jason Ruud shares his story as dad to heart kiddo Breanna
 

Faith and Miracles:

When I was growing up, I always considered my heroes to be professional athletes who made incredible moves on the field or court and made the impossible look easy. Little did I know, that in 2010 the word “hero” would take on a whole new meaning for our family. That word became synonomous with courage, strength, and perseverance against insurmountable odds and delivered in our baby daughter, Breanna.

 

 Learning that your child is going to be born sick….really sick

Like many heart families, our world came crashing down as we prepared for the arrival of our baby. After our first child, we were excited to go to our 20 week ultrasound to learn the sex of our second. We watched as the sonographer did there typical measurements and let us know we were having a girl! But, this time was different than with our first. She kept coming back to the heart. We knew by the look on her face something was wrong. Each time she scanned the heart, it started to become obvious to us as well. She left the room and our hearts sank. There was something wrong with our baby’s heart. The OB quickly diagnosed our daughter with single ventricle heart disease. I remember walking into our home after that visit and collapsing to the floor in tears and disbelief. We quickly learned from our new cardiologist that our baby had Tricuspid Artresia. More weeks passed and more ultrasounds. Each gut wrenching scan brought new complications. Eventually, we learned that our daughter would be born with tricuspid atresia, transposition of the great arteries, bi-lateral SVC, and pulmonary stenosis. We officially entered the world of congenital heart disease, and I became a heart Dad.

 

 

 

Breanna’s story

Thanks to the incredible team at Children’s Memorial Hospital in Chicago(now Ann and Robert H. Lurie’s) our daughter was born on June 6, 2010 and transported from our local hospital down to the NICU at CMH to prepare for surgery. I sat there in the NICU alone, my wife still an inpatient 50 miles away, watching cardiologists and surgeons pour over CT scans of our baby daughter. Three days later she received her first procedure, the Norwood and BT Shunt. As I look back on that day, my wife and I were so unaware to the incredibly risky surgery my daughter was undergoing. That changed quickly, when four days after her procedure, the doctor’s removed her intubation tube. What was meant to be a joyous moment, became our worst nightmare. Breanna immediately began to struggle, gasping for air, she quickly turned blue, her heart began to slow…then stop. Our baby daughter had gone into cardiac arrest. She was rushed back into surgery and 10 hours later, an attending doctor came to speak with us. They were not sure why this happened. Fortunately, they were able to restart Breanna’s heart after 8 minutes of “down time” and revise her shunt as a precaution. Her second surgery was much harder than the first. Breanna fought for her life for the next 72 hours. So many moments during those days that we thought we would have to say goodbye. Shortly thereafter, Breanna went into septic shock due to a blood infection. But, Breanna kept fighting. Days turned into weeks, then weeks into months. Each attempt to exhubate the breathing tube was failing, causing additional set backs. After 4 exhubation attempts we decided to trach our baby daughter. 6 months after arriving at Children’s Memorial hospital, Breanna came home. Now tethered to a portable ventilator with around the clock nursing care, our home became her new hospital room. Breanna surprised the doctors by thriving on her trach and ventilator! She received her second of 3 surgeries, the Glenn procedure at 2 years old. Again, she defied the odds receiving the Glenn procedure while still on a ventilator. Between her second and third procedures, Breanna was finally able to be taken off the ventilator. At 4 1/2 years old, Breanna received her 4th open heart surgery, the Fontan procedure.

 

Living in constant chaos

Those initial 6 months were the hardest. I began deflecting my emotions and my inability to protect my daughter into learning everything there was about her heart disease. After leaving the Ronald McDonald House, my wife and I began a grueling schedule that ensured my daughter would always have a parent by her side. For the next 4 months, I traveled an hour and a half from our home in the western suburbs downtown to CMH. I would arrive in time for morning rounds at 7:30am and never missed a single one. To me, my new job was to listen to the doctors, ask questions, and be her fiercest advocate. Her medications, vitals, daily tests, physiology, everything, I knew them all like the back of my hand. I memorized every variable and range in every test and when things were off, I prepared myself and my wife for the “ride.” This was my way of “normalizing” and coping with the intensity of the situation. I’m sure it drove the doctors and nurses a bit nuts. But, I was grasping at anything to control. After rounds, I would hop on the “EL” train and head south to my job, work there till noon, then work from Breanna’s ICU room till my wife arrived and stayed through the night. My wife and I recently reflected on how incredibly flexible my manager was during this time. I know fathers that had to leave their job, just to spend time with their sick children. I was blessed. One less stressor in a volatile situation. The biggest casualty during this time was my 3 year old son. I regret losing 6 months as his father. The chaotic events of those 6 months effect him to this day.

 

The aftermath

Those 6 months are seared into my mind. There’s not a day that goes by that I don’t think about them. There are so many memories that I often reflect upon. The initial 9 weeks at the Ronald McDonald House. The “bad” days sleeping in the chair next to my daughter praying that she will survive the night. Watching the doctors and nurses tirelessly work throughout the night like machines. And worst, the late night ring of the phone that makes you want to vomit. I felt a complete loss of control with no ability to protect my newborn daughter. Fortunately, my faith was my foundation and the only thing that got me through. I now suffer from PTSD in the form of germophobia. I wash myself and my children’s hands incessantly. I will do anything to avoid those CICU rooms. And when we do have to return for sickness or surgery, those emotions and memories come flooding back.

 

I have learned so many things as a heart father. One of the biggest lessons I have learned along the way is hope and humility. As a Father, my job is to protect my family, to keep them safe from harm. A task we fail at miserably when dealing with the complexities of congenital heart disease. There were so many days that I held my baby daughter’s hand in those hospital rooms and prayed to switch places with her, willing to take her pain away and end her suffering. Unfortunately, as a heart Dad, we must rely on other’s to heal our children. Thank goodness my family was blessed with the amazing CICU nurses and staff at Lurie Children’s Hospital and the incredible surgeons: Dr. Carl Backer, Dr. Sunjay Kaushal, Dr. Hyde Russell, Dr. Michael Monge, and Dr. Osama Eltayeb. Without these incredible people, my daughter wouldn’t have defied insurmountable odds and become a vibrant and beautiful 7 year old.

 

Today, I serve on the board of a non-profit. We focus on advocating for congenital heart disease and raising funds for an experimental technology that may someday improve and extend the life of children living with single ventricle heart disease.

 

 

Jason is a 41 year old resident of South Elgin, IL. A western suburb of Chicago. He works in technology as a creative lead, building interfaces for enterprise software. Jason is an avid outdoorsman who’s passionate about hunting and taking his kids fishing. He is also the head coach of his son’s youth football team. He’s been married for 11 years to his wife, Ashley, who cares full time for their 3 children: Caleb(10), Breanna(7), and Jillian(1). Ashley is also treasurer for PCHA – IL.

A Little Love Story

PCHA continues its Heart Dad Series with a piece by Ryan Freund. Here, Ryan shares with us how being a dad to the amazing Adair, as she battles a rare genetic disorder that includes CHD, hip dysplasia, digit issues, scoliosis, tethered cord, hypothyroidism, hypoglycemia, is both the greatest blessing and greatest burden of his life.

 

 

The burden: I was talking with some parents of special kiddos the other day, and we got on the topic of PTSD and began discussing the moment (or moments) that REALLY impacted us emotionally, physically, etc.  The event that really strained us was during our daughter’s last open heart surgery.  Adair required another arch reconstruction and the Ross-Konno procedure, which involves removing the aortic valve, harvesting the pulmonary valve and placing it in the spot of the aortic valve, and putting a conduit in the place of the pulmonary valve.  As this was Adair’s third OHS, we had developed an understanding of how long things ought to take during surgery.  That day, everything just seemed to take extra long…but after 13 hours, we got word that they were closing Adair’s chest and that we would see her in about 30-45 minutes.

 

When time started to drag on toward the 45 minute mark, we got the feeling that things just weren’t right.  That’s when the surgical nurse came out to give us the news that the closure had taken a very bad turn.  Coming off the operating table, Adair’s heart went into ventricular fibrillation, she received two minutes of chest compressions, and she had to be defibrillated.  Once they got her heart stabilized, they re-opened her chest, called in the on-call cath lab team, and needed to check her coronaries to ensure the heart itself was being fed.  After seeing our little girl off to surgery at 7am, we finally got to see her in the hallway at 10pm as she was being wheeled back to the Cardiac ICU.  There were some additional complications during our stay which further intensified our experiences – Adair had an adverse reaction to a medication that made it look like she had brain damage.

 

All told, riding the emotional rollercoaster of being very close to losing our daughter, coupled with the prospect of her potentially having brain damage, we couldn’t talk about the whole experience for about 3 months without being overcome with tears…tears that couldn’t be controlled.

 

The blessing: I hear people say all the time that they “wouldn’t change a thing about their lives, because otherwise they wouldn’t be the people they are today.”  I am here to tell you that I would absolutely take away my daughter’s genetic disorder!

 

But since that isn’t possible, I must say that the past 2 and a half years have been life-changing in so many positive ways.  First and foremost, we have the most precious little child you could ever imagine.  She is tough beyond words, she is sweet, she is funny, and she has this way of drawing you in when you meet her that really grabs at your heart.  I think many others would confirm this, but when people meet Adair, they really seem to love her – truly love her.  She has a way about her that is captivating.

 

She has taught her mother and I about the depths of faith, unconditional love, patience, and forgiveness.  She has given us a remarkable perspective on life that is a true blessing.

 

Speaking of perspective, I will share just a small glimpse into the perspective Adair has given us.  I think sometimes it’s easy for us as parents to check out every once in a while.  Being a parent is TOUGH whether your kiddo is medically complex or not, and the age in which we live offers a lot of distractions.  It’s very easy to flip on the television and hit up Facebook for long stretches.  It’s easy to lose your patience with a behavior.  It’s easy to lose focus.  Now don’t get me wrong, we all need a mental break sometimes!  I would be lying if I said that I’m 100% on all the time!  But what Adair’s life has done for us is bring into focus the preciousness and fragility of life.  We have no idea how much time we will get with Adair, but I can say with certainty that the perspective Adair has brought my wife and me causes us to remind each other that we need to cherish each day.  We need to be present each day.  We need to love fully each day.  How many people get the opportunity to understand the preciousness of life in this way?  It’s a remarkable blessing!

 

I’d like to send some additional thoughts out to the fellow heart dads out there.  For a lot of us, sharing our feelings, our emotions, our struggles, our insecurities is tough.  We’re men, and many of us want to be the strong shoulder to cry on as opposed to the sobbing mess in the corner.  Let me tell you, though, that it’s ok (and probably even necessary) that we talk about our struggles, that we share our concerns, and that we are ever-present for our kiddos.  Being a dad to a special child is a huge burden, there’s no question, but it can also be a huge blessing.

 

I pray that all of you fellow heart families find the daily blessings in your lives as you walk this very special path.  And I pray that if you are a family member or friend of a family with a special child that you love them unconditionally and are able to be a light in those burdensome times of darkness.

 

 

Ryan is a 34 year old resident of New Berlin, Wisconsin who grew up in northern Illinois.  He is in sales in the automation and power transmission industries and loves what he does for a living.  Ryan has been married for 9 years to his wife, Melissa,  who is a mechanical engineer. Melissa now stays home with their daughter Adair full-time.  Adair, is 2 and a half years old and has a newly discovered genetic disorder which explains her complex CHD (interrupted aortic arch, VSD, ASD, surgically repaired bicuspid aortic valve with sub-aortic stenosis through Ross-Konno procedure), hip dysplasia, scoliosis, tethered spinal cord, syndactyly, hypothyroidism, cognitive disability, and a few other things.

 

 

We Make A Good Team

Yesterday our families took time to honor and show our appreciation for our Dads. In our latest blog, Heart Mom, Roxanne Bejarano, shares with us what her husband, Angel, means to her and their family.

My husband is heart dad, Angel Bejarano.

I could not have gone through our experience without the support and guidance from my best friend-my husband. We really made a great team when we found out our son Miles’ heart condition. We definitely leaned on each other and developed a rhythm that nobody else understood. We didn’t get in each other’s way, and both knew we wanted to be with our son 24:7. We never left the hospital, until after his heart transplant surgery. We knew the hard part was over, but that a whole new life was about to begin.

Being in the hospital, waiting for a heart donor, questioning the doctors, and trying to rationalize why our son was in heart failure were definitely stressful times for us to overcome as husband and wife. We’ve been friends for over 20 years, and our friendship became much stronger after going through this experience.

We understood each other and he gave me the courage to know “it was not my fault” – it wasn’t anyone’s fault. The hardest thing about being a mother,  for me, was that I brought a sick child into this world, but knowing my husband will stand by me and not blame me is the one thing that helped me cope through all this.

We learned very quickly that we were in our own world. Nobody understood what we were going through; we were alone. It took our love, strength, and faith to enter into this new parenting mode, and we discovered that nothing else matters but Miles’ health.

Thank you Angel for being my angel. Love you so much!

 

Roxanne Bejarano was raised on the north side of Chicago and is a huge Cubs fan. After meeting Angel in grade school, she and her husband have been friends for more than 20 years and married for six. Roxanne is medical coder for Northwestern Memorial Hospital, and has two sons, Miles and Logan. Her days are filled with caring for her boys and staying on top of Miles’ medical needs, including medications, doctor visits, and speech therapy. When you’re a heart parent, the only people who understand what you’re going through are those that have been in the same situation; that’s why Roxanne and her husband love the heart community and PCHA.

The Immense Sky: Space to Deal, Space to Feel

Our Heart Dad Series continues for the second week of June. Here Margaret King shares how her husband Shawn’s reaction to their journey as heart parents differed from her own.  

As I sit here writing about heart dads, I realize that it’s impossible to finish this piece without my husband, Shawn. So, we are camped out on the patio of a local coffee shop on one of those rare, picture-perfect Wisconsin summer evenings that seem to go on forever, talking about our different ways of handling this journey over the 9+ years now since we heard the news of our son’s HLHS at our 20-week ultrasound.

How can two people walk the same road and yet have two very different experiences? It’s humbling to realize that our own perceptions of the same events can be wildly different, no matter how intimate the relationship. Imagine going on vacation to hike in the Rockies with your spouse, soul mate, and/or dearest friend, and realizing at the end of two weeks of backpacking, one of you had noticed every small detail about the flora and fauna you’d passed, whereas the other had focused on studying map coordinates, local lore, and the geological layers of the mountains.

Would you feel like you were speaking separate languages, and find the other person’s view of the trip incomprehensible? Or would you cherish each other’s interests and strengths, and feel your lives were richer for sharing your different scopes of knowledge with each other?

That’s how the marriage of two heart parents can be. Shawn and I had to find a balancing act, a way to play off each other’s different strengths and try to compensate for our each other’s weaknesses, to avoid the utter exhaustion of duplicating the hard work of raising a little person with a single heart ventricle. In that spirit, we thought it would be best to have a “his & hers” dialogue about our different experiences as two heart parents sharing the same child.

Shawn: You’re really good at handling all the little day-to-day stuff that drives me insane. It’s the endless tiny glitches of everyday problems that wear me down.

Margaret: Yeah, and you’re good with the really big things. I can’t handle the big upsets. I kind of tend to fall apart with those.

Shawn: My strong point isn’t networking or making connections with other heart parents.

Margaret: Whereas I’ve met a lot of people and made a lot of great friends on this journey. I couldn’t do it without them.

Shawn: You stay up to date on the current research.

Margaret: You focus a lot more on creating a sense of normality, while I can get into these funks where I dwell too much on the medical stuff. But, I don’t mind dealing with the school and handling all the teacher meetings and IEP procedures.

Shawn: No doubt!

Margaret: I feel I’ve had a lot more ups and downs and this journey, and you’ve been more of the steady one.

Shawn: The heart condition is an ever-present background hum for me, but I try to keep it in its place. But, it never goes away.

Shawn & Margaret: We both think that it’s ok to deal with the realities of raising a heart kid in different ways. Whether you’re married or a single parent, sometimes the complexities and circumstances of raising a heart child are far beyond what any one person can be reasonably expected to handle. As heart parents, we all need to recognize our own areas of strength and build on these, while relying on others to help with some of the areas where we aren’t so strong. In a heart parent relationship, it’s important to give each other the space to deal and process in our own ways, because two people may handle the same situation very differently.

Giving each other space to deal and allowing each other to work as much as possible in our different areas of strength has worked for me and Shawn. It’s allowed us, in the words of my favorite poet, Rainer Maria Rilke, to see the immense sky before and above us.

“Once the realization is accepted that even between the closest people infinite distances exist, a marvelous living side by side can grow up for them…which gives them the possibility of always seeing each other as a whole and before an immense sky.”

–Rainer Maria Rilke

 

Margaret King is the mom to the almost-9 year old mighty K-man, a spirited boy with half a heart who is determined to live fully, and is married to the awesome heart dad, Shawn. A content marketer and writer in Wisconsin, her other interests include hiking and being outdoors, reading, and avoiding going down the thrill water slides her son is passionate about. She hopes to have a small goat farm someday.

Making the (Heart) World a Better Place

 

In honor of Father’s Day, for the month of June, PCHA is pleased to focus our latest blog series on Heart Dads.  What better way to start than revisiting a powerful message from Heart Dad and recurring guest writer, Chris Perez.

Let’s get one thing out of the way: the day you looked at the grainy ultrasound image as your wife’s doctor started his or her sentence with “unfortunately” or the moment you realized your newborn would be whisked away via ambulance or helicopter, fatherhood became way different. You realized that the formative years of your child’s life would possibly be spent in doctor’s offices vs. on a football field or an ICU floor vs. a basketball hardwood floor. You suddenly found yourself more tired than you’ve ever been, more broke than you’ve ever been, and more scared than you’ve ever been. Being a dad is hard work, and if you’re like me, some days you feel like maybe you’ve got a bit of a grip on this whole things, while other days you feel like the Washington Generals and life is just waiting to douse you with a bucket of water. So how do you know you’re doing things right? Last year I stumbled upon this fantastic quote by Ralph Waldo Emerson, who wrote the following about success:

To laugh often and much;

To win the respect of intelligent people and the affection of children;

To earn the appreciation of honest critics and endure the betrayal of false friends;

To appreciate beauty, to find the best in others;

To leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition;

To know even one life has breathed easier because you have lived;

This is to have succeeded.

I actually have this quote cut out and taped on my bathroom mirror, and I feel like it’s super powerful, especially for a Heart Dad. You see, for us this quote seems a little weird. Laugh? You gotta be kidding me, right? I promise you guys, there are moments of laughter in there … it might take awhile, but it will come.

Maybe you’re not the smartest, but I guarantee you that Heart Dads work the hardest. And it doesn’t take a wall full of degrees to accomplish that. And sure, our kids may not be considered physically healthy, but we can make sure we raise heart warriors who are kind, empathetic, and want to make the world a better place. I think that is what Emerson was talking about there.

To know even one life has breathed easier because I have lived. That’s a big responsibility, but that’s why you share your story, that’s why you advocate for CHD research. That’s why I write my blog. Listen, there are days I don’t feel like doing it. I’d rather sit on the couch and eat a whole carrot cake, but people continue to contact me letting me know how much I’ve helped. And that is what keeps me from quitting. Dads, there are people out there waiting to hear your story … they need to hear your story.  Share it!

The journey of a heart family is full of ups and downs, cheers and tears, joys and sorrows. It would be so unfair to use traditional measures of “success” for a Heart Dad. For me, Emerson’s words are what I hope to achieve. I hope that it works for you too. Because when it’s all said and done, if I never get another raise, if I never make more money, if I never have the nicest car, it will all be OK as long as I’m a great dad who did all he could for his family and others. That’s how I want to be remembered.

So Heart Dads, when you’re giving yet another late night tube feed, or you’re trying to get comfy on that wonky recliner in your child’s ICU room, or you’re flexing off work to go to yet another doctor’s appointment, I want you to do a few things. First, take a few deep breaths. Next, think about the smiles and laughs, think about the awesome kid you’re raising, and think about what you’re doing (or can do) to make the world a better place for Heart Kids and Heart Dads. And my hope for you is that – in that moment – you’re reminded of your impact and your strength. Keep it up, Dads! And have a Happy Father’s Day this month!

HeartWalk2015


Blogger_Perez_ChrisChris Perez (aka HLHS Dad) lives just outside Charlotte, NC with his wife and 3 sons – including Nolan, who was born with HLHS in 2012.  He is the author of Half Heart. Whole Life: an HLHS Dad’s Blog, where he shares his journey as a heart dad with honesty, humor, and the realization that dad’s just handle things differently. In his spare time – if such a thing exists – Chris enjoys New York Yankees baseball, playing guitar, and memes.  You can visit Chris’ blog at http://hlhsdad.com.

American Stroke Awareness Month – Terese’s Story

For the month of May, PCHA has been focusing on American Stroke Awareness Month. In the 4th week of our series, Terese Quarino shares her experience with stroke.

 

I remember the day, like it was yesterday…. The Wednesday before Labor day weekend, I called my cardiologist to say I felt some funny beats in my heart, but no other symptoms.  He said he would send me a holtor monitor overnight to wear for 24 hours. I did exactly what he told me to do, and when I received a call from him late on a Saturday night, a holiday weekend, I knew something was up!  He told me to pick up two medications at the pharmacy that night, start taking it, and that if I have any fast heart rates, go straight to the ER.  I agreed.  If I didn’t see him in the ER, I would see him first thing Tuesday morning in his office.  He explained everything  to me on the phone, but it came out of the phone like Charlie Brown talking  (Mwa-Mwa-Mwa sound).  I hung up the phone and didn’t tell my parents anything, except that I needed to pick up the medications and be at my doctors office Tuesday morning.The rest of the weekend went fine and we went to my cardiologist office Tuesday morning.

As soon as I arrived, I had an EKG, an echo, and blood work done.  It was determined that I was in heart failure. My heart rate was at about 300 beats per minute.  I met with an electrophysiologist and my cardiologist to determine what would be the best course of treatment.  We decide cardiversion would be the best route. Since I had already eaten breakfast that morning, we would have to wait until the next day.

Wednesday morning, my doctors started with a TEE (Trans-Esophageal Echocardiogram) to see if there are any blood clots that they could see before they performed the cardioversion.  When they didn’t find anything, they moved forward with the cardioversion. After the procedure I was feeling great.  The doctors decided to keep me overnight, until my Coumadin was at a therapeutic level. One of my parents always stays with me after any procedure or surgery.  I told my parents I was fine, and they could go home. Twelve hours after my procedure I had  stroke.

My nurse was in the room, checking on me, and I could not speak. Then my arm started to bend, and it went behind and arched my back. Next, I could not feel anything in my hands or feet.  The nurse left the room, and I remember thinking to myself, “why is she leaving me?” But looking back, I realized she pushed a button before she left. Seconds later, a rush of doctors and nurses came to my rescue.   If it was not for their quick response, the lingering symptoms from my stroke may have been worse.

After my stroke, I had cognitive, physical,and speech therapy, which I’m truly thankful for. I will be honest, I struggled with it! But, step by step, I got through it! I still struggle with how my stroke impacted my everyday life. My handwriting is horrible, it’s significantly worse than before my stroke.  I also have a hard time with recall. At work, when I need to speak at a meeting, I would jot down notes to prepare. Now, if I just write it down, I may not remember what I need to say, so instead I type ord for word in the note section of my phone, so I can read it.  All these issues add up to big issues.

Having a stroke has changed my outlook on life. It has taught me to live everyday to the fullest! My experience with stroke was quite a scary time for me, and I will never forget  how it felt!

 

 

 

Terese was born with Tetralogy of Fallot in 1973, which was repaired in 1974 at Children’s Memorial Hospital in Chicago, IL. In 1992, she had her second open heart surgery, and mitral valve replacement. Terese’s other medical conditions include a lumpectomy in 1990, and multiple treated aneurysms. She also started dealing with rhythm issues, and still is to this day, which required a cardioversion in 2007. Twelve hours after her cardioversion, Terese suffered a stroke. She has also had two ablations, and had a pacemaker implanted in September 2014.  Since then, Terese’s medical history has been further complicated, in recent years, by being diagnosed with Lupus (SLE) in 2013 and Shrinking Lung Syndrome in 2015. In her free time, Terese loves spending time with her family, friends, and her puppy, Payton. She also enjoys swimming and listening to great music.  She lives each day to the fullest!

 

 

 

American Stroke Awareness Month – Molly’s Story

 For the month of May, PCHA will be focusing on American Stroke Awareness Month. In the 3rd week of our series, Alison Ogden shares the story of her daughter Molly’s stroke at age sixteen.

 

Molly awoke for school on November 5, 2012 as if it were any other Monday in her Sophomore year of High School.  But life suddenly changed that morning, as her mother, Ailson, found her collapsed and unable to speak.  Even though Alison knew the signs of stroke, she didn’t recognize them in her physically fit, distance running 16 year old. Fortunately, the first responders did. The local hospital determined Molly had suffered a massive stroke following a dissection of her carotid artery.  After a scan was performed it was confirmed that Molly had a clot in the brain.  She was transported to a larger hospital where she would spend the next month and undergo a series of procedures designed to save her life. 

She was then transferred to an inpatient rehabilitation hospital in a neighboring state where she would spend the next 2 1/2 months.  She returned home on February 12, confined to a wheelchair and still unable to say more than a few words.  She started out-patient therapy right away.  Her determination and drive, along with her positive attitude and faith, kept her focused on recovery.  She returned to school on a part-time basis in April while still spending many hours in therapy each week. 

By taking a full load of classes, working closely with the help of a para-educator and devoted school staff, she graduated with honors, on time, with her class in May of 2015!

Molly has attempted college classes, but, because of her aphasia, she found them to be extremely difficult.  She still struggles to regain communication, her right hand and foot don’t work the way she would like, but she is determined to continue therapy and still sees improvement.  Molly brings joy to every situation she is in, including the volunteer work that she loves.  She is open to talking about her situation and feels that spreading awareness of the signs and symptoms of stroke is important. While caring for Molly, Alison has been inspired by her attitude. She has learned from her daughter to look for the best in all people and to live life to the fullest each and every day.

 

 

Alison grew up in Kansas City. She and her family, which includes her husband, Brad, daughter, Molly and son, Graham, has recently moved to central Oklahoma, where they live on a cattle ranch. Alison is a recruiter for Jos A Bank and feels lucky to work from home! Her husband owns a home restore/remodel business, with which Alison also assists.

American Stroke Awareness Month – The Asher James Foundation

For the month of May, PCHA will be focusing on American Stroke Awareness Month. In the 2nd post of our series, learn about the Asher James Foundation, founded by Jen DeBouver after the loss of her son Asher.

 

In October 2012 our whole World changed. The outcome of our son’s life was about to change. On October 5th our son Asher looked like a beautiful, somewhat healthy baby boy who was recovering from his heart surgery. He had been doing well when it came to his heart related procedures. He had gone through a fetal intervention, months before being born, a cath procedure at hours old, and then his heart surgery. He had a few minor hiccups along the way, but for the most part was doing well with recovery, so we thought.

On October 6th, Asher was red and puffy. My husband questioned the doctors as to why he was so red and puffy, but they didn’t really have an answer. It was the weekend, not much was really done to get one. By Monday, we really had no answers until finally they told us he had blood clots. The clots were in both jugular veins, and both arms.

It’s funny how dates stick with you. October 8, 2012. The day my son got his death sentence. When they told me he had blood clots, that is exactly what I thought because I didn’t really know much about them. What I thought I had heard was that they were deadly. And. They. Are.  I had no idea babies could get blood clots.

We met with the Hemotologist and she started him on different blood thinners, but she explained to us that there were no medications for children, especially infants when it came to blood clots. She reached out to colleagues across the country to find a treatment plan for Asher. Adult medications was the only option. We began treatment and it seemed to be working.

And then it wasn’t. The clots would redevelop.

Sadly, on October 23rd, Asher would lose his battle with these blood clots. Asher was a fighter and SO strong. He battled these clots for over 2 weeks. He inspired me with how much he fought, so before we even left the hospital, I had decided, in my shocked, grief filled state that I wanted to start a foundation in his memory. I wanted his fight against blood clots to continue.

So a few months later, Asher James Congenital Heart Disease & Thrombosis Foundation was created. I knew I didn’t want another parent to be shocked that their child could get blood clots. I wanted them to receive information while they were in the hospital of signs and symptoms of a blood clot. We started working with groups that deliver care bags to CHD patients and supplying them with our signs and symptoms cards.

Asher James Foundation has worked with Ann and Robert H. Lurie Children’s Hospital on spreading awareness in children’s blood clots by sponsoring Children’s Blood Clot Awareness Day. We have also been to Washington D.C. to advocate on children’s blood clots.

 

Each year for Asher’s birthday we hold a softball event where we play Chicago style softball against our local PCHA IL group. It’s a fun day remembering Asher, spreading awareness, and collecting things to donate to the CHD and blood clot patients in the hospital. We usually sell stuffed giraffes and donate one with each purchase. This year we are doing a book drive to collect giraffe themed books to donate to the patients. Asher would have been going to Kindergarten this year, and I’m sure he would have loved reading books.

 

A lot of research has been done in the past 5 years and treatment in children’s blood clots has come a long way. There are better treatments and survival ratings than when Asher was in the hospital. We had the privilege to meet with researchers at the University of Iowa to learn about some of the advancements.

If you provide care bags to hospitals where children could be at risks for blood clots and would like to add our signs and symptoms cards, please reach out to us and we would love to send you some. www.asherjamesfoundation.org.

 

 

Jen is a bereaved mom of 2, Olivia and Asher and a rainbow mom to Nina. Jen and her husband JD started Asher James Congenital Heart Disease & Thrombosis Foundation after losing Asher to provide support and awareness in children’s blood clots. In the past, Jen was the bereavement coordinator for Mended Little Hearts National and Mended Little Hearts of Chicago She decided to take a break to focus on her rainbow after all. She continues to do projects such as Grief: A Mother’s Project and currently the Rainbow of Hope Project. Each year she and her husband hold a softball event for Asher’s birthday, which includes collecting something (stuffed puppy or dog or books) to donate to CHD patients at Lurie Children’s Hospital. She also works with her sister-in-law to collect blankets for Olivia’s Blankets in memory of Olivia.

Jen is very open about her losses, and feels that by being open she can help others through speaking about their own loss or help others to learn how to be sensitive to those that have gone through a loss.