A Life Raft: A Parent’s Experience using the Guided Questions Tool

Esther Kinney

Esther Kinney

The Guided Questions tool was designed to help parents promote discussion with their cardiac care team. At the Pediatric Congenital Heart Association (PCHA), we believe that information is important when making decisions about the care of your child. The tool is broken into three key aspects of care: quality data, patient experience and looking ahead. Esther Kinney shares her own experience using the Guided Questions during pregnancy, after her daughter was diagnosed with CHD.

 

How did you learn about the Guided Questions tool?

I learned about the Guided Questions tool during my first telephone conversation with Amy Basken, co-founder of PCHA. I was a desperate emotional wreck. I still remember the relief I felt when she described the pamphlet.

Why did you decide to use the tool?

After learning of my daughter’s heart condition, I felt completely lost and overwhelmed. My world was rocked to find out that my daughter Sophia would need open heart surgery immediately after birth. I knew that I didn’t have the necessary knowledge to manage all of the decisions. I had to ensure she received the best possible care, but wasn’t sure where to start. When Amy mentioned the Guided Questions, I felt as if I was handed a life raft. And it was. It would be one of the most important resources for selecting the best location for my daughter’s care.

When using the Guided Questions, did you bring in the actual pamphlet or prepare a list of questions on your own?

I printed the brochure and kept it in the front of my “Sophia binder”. I brought the questions with me to the appointments, read them verbatim, and took the time to write down the answers.

Which questions were the most helpful to you and why?

How many procedures do you perform each year? | How many times have you and your program performed this procedure or ones like it in the last year? Over the last 4 years? | What is the survival rate for this type of procedure at the time of hospital discharge? After one year? | How do your results compare to other centers’ results?

The responses I received from facilities differed significantly. I think I had the expectation that this type of specialty care would have similar outcomes no matter which hospital you go to, but I was very wrong.

What are the most likely complications or things that can go wrong with this procedure and how often do they happen within one year of this procedure? | Do you share your results with national data programs such as the STS Database or Impact Registry to help improve care? Is this information open to the public?

In my experience, there are hospitals that focus on things they are good at and sweep their areas of deficiency under the rug. Unless questions are asked directly and consistently, it is difficult to compare the answers.

Did the tool help you discover new questions that you hadn’t thought of?

Yes! I was an emotional wreck. I had no idea to ask if there was a dedicated CICU.

How did the questions impact your confidence in talking to your care team?

It gave me a voice. It empowered me by helping me feel competent.

Tell us about the reaction from your doctors when you asked the questions from this tool.

One of the providers shrugged off the necessity of such a tool and completely disregarded some of the questions. He told me that I shouldn’t go through life focusing on all the things that could go wrong. He said that any one of us could walk across the street and get killed by a car. I wanted to ask him if he realized we were talking about the health and well-being of my precious child.

Another team of providers took each question seriously. They provided thorough answers. They went above and beyond to make me feel as comfortable as possible, while providing a realistic prognosis and expressing genuine concern for the well-being of my daughter.

What impact did the tool have in your own knowledge and in your child’s care?

As a nurse, I understand basic medical terminology. However, I haven’t worked on a general cardiac unit, and neonatal open heart surgery is even more complex. This tool gave me the correct language to use. It identified the expectations that were appropriate. For example, it is okay to expect that the hospital has a dedicated CICU, with specialized CICU nurses. It is okay to expect that hospitals are transparent with their statistical outcomes. It is always okay to seek a second opinion.

As a mother, I often second-guess many of the parenting decisions I make. Using that tool and going to the hospital that respected my need for information are two decisions I have never regretted.

Would you tell others to use these questions and why?

Yes! I share this brochure all the time. I will always be a heart mom. Amy will always be a heart mom. She handed me a gift when she told me about these questions. I want to pay it forward and pass that gift along as often as I can.

Passion and Progress: A Provider’s Perspective

In July, PCHA is highlighting the need for transparency. Our goal is to inform, educate, and empower patients and families to actively participate in data-driven shared-decision making. Julie Slicker, a member of the PCHA Medical Advisory Board and lead on the Guided Questions Tool, speaks about the importance of transparency from a provider’s perspective. 

“We didn’t know until after our child was born,” “How could we predict what to ask the doctors? We had to just blindly trust in their skills,” “We were so afraid that we felt paralyzed and we didn’t know how to ask the right questions.” These are the parental anxieties that we, as providers, hope to have the power to impact. And today, with the effort of PCHA and their new Guided Questions Tool (GQT), maybe we can. But first, a story.

I will never forget the first time I had the privilege of caring for a child with congenital heart disease (CHD). It was 10 years ago, and the honor I felt being able to care for that child’s nutritional needs has never left me. As a Registered Dietitian (RD), I have had the opportunity to meet with countless other families since then. That said, every provider has a memory of one child that pulls at their heart strings.

He was a tiny infant named Joe, with a family that had no idea they were having a child with CHD and whose unexpected rush to the hospital changed their life forever. Joe’s tiny little round head, his blue lips and fingers, the fear and anxiety his family had to face, the multiple hospital admissions and the surgical interventions he had to endure will remain with me forever. I have heard so many stories over the years that started out the same way: A time that is supposed to be filled with joy and excitement quickly turned to one of stress, anxiety, and a feeling of being overwhelmed and powerless. I wanted to help to heal Joe and take away the pain and worry of his parents. I wanted to make a difference.

Together with PCHA, I feel that we’ve discovered a way to make that difference. A Guided Questions Tool (GQT) was created to facilitate relationship building and transparency between patients, families and their providers when discussing surgical interventions for infants. This tool is designed to result in data driven answers that promote discussion, leading to the balance between accurate information and reassurance. The first phase of this effort included the development of a list of “Suggested Questions” that parents could ask their providers. Parents and medical providers joined efforts and vetted the questions to identify those that reflect quality of care and outcomes. The questions were sorted into categories to address center outcome data, hospital experience and long-term outcomes. The questions were further edited by a multi-disciplinary team of providers and parents to ensure that they would meet health literacy goals and result in a transparent discussion between parents and providers. From this effort, the first true iteration of the GQT was born.

The next step is to test the GQT’s efficacy in practice. We have gathered a multidisciplinary team comprised of four CHD centers from all over the country to validate this tool via surveys for both providers and parents. We plan to initiate this phase next month.

The mere existence of PCHA, and the GQT that they have helped develop, speaks volumes about where we have come from as a discipline practicing in CHD. A nurse scientist colleague of mine who has dedicated her life’s work to improving the quality of life and developmental outcomes of children with CHD once showed me an old tattered notebook that forever changed my perspective on CHD. In this notebook she showed me the meticulous handwriting of one dedicated surgeon’s log of procedures from the 1980’s. This notebook held a list of patients with Hypoplastic Left Heart Syndrome (HLHS), one of the most severe forms of CHD. Written in front of the first 12 names was a capital letter D, denoting the passing of every single one of those infants. The nurse scientist explained the struggles in the early years of the Norwood procedure. Twelve names. Twelve families. Twelve tiny little infants with so much hope … and ultimately twelve deaths due to complications from this poorly understood physiological nightmare. Then miraculously, after twelve failures, there was a name in the book that stood alone; there was not a letter D written next to it.  The thirteenth child lived. And is still living today. This story makes me remember why sometimes failure is a greater lesson than success. It is often said that it is much worse to never try at all than to suffer repeated failure. I cannot imagine the perseverance this cardiac team maintained as they pushed through so much devastating failure. However, it is due to those families and the trust they placed in the medical team that the surgeons learned what they needed to. Yes, these early families lost their infants and have experienced unimaginable pain, but I can only hope they gained solace in the fact that their infant’s death led to the life of thousands more. They changed the course of cardiac surgical history. Today our facility, Children’s Hospital of Wisconsin, proudly touts that greater than 90% of these patients survive surgery to go home with their families. In the 1980’s these babies did not make it through their first months of life, and today our expectation is that most will grow into adulthood.

So, keeping this story in mind, here we stand. We can now save the lives of thousands of individuals with CHD all over the country. Cardiac programs have been built surrounding the ideals of survival and excellent outcomes, but as far as most of us working with CHD families are concerned, it is still not enough. Survival rates are high, we have surpassed that hurdle, and now we are focusing on improving care even earlier, particularly, during the prenatal period. In order to help families navigate the difficult world of congenital heart disease, PCHA, along with other cardiac providers from across the country, have implemented the GQT for this exact reason. This tool elicits discussions among providers and families around transparency and quality of care at cardiac centers. Joe’s family, like countless others, experienced extreme stress, confusion, and anxiety. They had to blindly trust their local CHD program. Our goal with the GQT is to give families a guide to discuss important topics with their fetal cardiologists before their baby is even born. This tool offers a list of questions that inquire about outcomes at each cardiac center, as well as what parents can expect during their hospital stay. Additionally, the GQT prompts parents to ask about what the expected long term results are for their child’s particular lesion. The GQT also focuses on the type and number of procedures children may undergo, the survival rate for their diagnosis, and the type of training and experience that the providers have. This tool will empower parents to ask the right questions, and will prompt providers to anticipate these questions and become knowledgeable about the answers. Utilizing this tool will allow transparency to take place, trust to be built, and knowledge to be gained.

Providers and parents alike push aside their fears and try to maintain hope that each child with CHD will have a positive outcome and achieve the quality of life deserved. It is because of this passion that I believe the field has progressed so far in the last 30 years. As PCHA and four other sites across the country embark on this small initiative to test and validate the GQT, I cannot help but think about the particular surgeon and his team in that notebook, and how they truly changed the world of CHD forever. This tool may be a drop in the bucket in comparison, but we aim to continue raising the bar for families with CHD to help support and empower them as much as we can.

It is truly an honor and a privilege for all of us that work with CHD families to help change the world – one CHD family at a time.

Julie Slicker MS RD CSP CD CNSC with edits by Sydney Allen, MPH


Julie SlickerJulie Slicker is currently the Quality, Outcomes and Research Manager of the Herma Heart Center at Children’s Hospital of Milwaukee in the Division of Cardiology. Julie has been at Children’s Hospital of Wisconsin since June 2006. Pediatric nutrition for infants with complex congenital heart disease is Julie’s passion, and since 2006 she has dedicated her time to caring for the nutrition of this patient population. In conjunction with patient care, Julie’s research focuses on hypoplastic left heart syndrome (HLHS) and single ventricle physiology. She pursued her Master’s Degree at the Medical College of Wisconsin in Clinical Translational Science and graduated in 2013. She is currently pursuing a degree as a nurse practitioner in order to  continue her work in the cardiac ICU, caring for the patients she has come to cherish over her career thus far.

Blog photoSydney Allen is a Program Coordinator for the Herma Heart Center at the Children’s Hospital of Wisconsin, focusing on quality improvement initiatives. Many of her projects revolve around improving patient outcomes, patient satisfaction, quality of life, and optimizing clinical process flow. She obtained her Master’s in Public Health Nutrition in 2014 and when she’s not busy working on healthcare quality improvement, she enjoys recipe testing in her kitchen to find simple, delicious, and nutritious plant-based meals to share with her friends and family.

Fathers Blog Series Recap

Your voice matters. For the month of June, PCHA recognized dads of children with CHD through our Fathers Blog series. The fight to conquer CHD is strengthened by the involvement of all of those who share our mission. It takes a community coming together around education, research and awareness to make an impact. Volunteer, join our advocacy network today, and connect with us on Facebook! In case you missed a post, below is the full Fathers Blog series:

A Story and a Scar: Rob uses his talent as a writer to share his story

Making the (Heart) World a Better Place: Chris uplifts fathers from his own experiences

A Father’s Loss, and Life After: Trey tells his journey in losing his son to CHD

A Letter To My Son: Nolan writes a heartfelt note on Father’s Day

Father’s Q&A Panel: Four incredible dads of kids with CHD answer relate-able questions

Being Present: Bill shares how he found a way to “fix” his family’s situation

 

Being Present

It has been incredible hearing from dads all month! Bill Foley, Executive Director of the Children’s Heart Foundation, writes about his experience as a father.

As a dad, my instinct is to be the strong one who fixes everything. However, when my son was born with congenital heart disease (CHD), I realized I was incapable of fixing the one thing I wanted to fix the most, my son’s health. I learned though, that I can still be the strong one for my family, “fixing” the condition we’re in by being present.

When I say present, I don’t just mean physically present. My idea of being present is providing emotional support to my family, attending and asking questions at my son’s therapy and doctor’s appointments, reading all of the latest CHD research, and helping wherever I’m needed. I know my presence doesn’t “fix” everything, but it helps.

Having a medically fragile child doesn’t hurt any less just because I’m a man. When we are in the midst of a CHD fire, I tend to internalize my feelings. But during these challenging times, or when my wife or child is feeling sad or frustrated, being present to lend emotional support helps all of us to get through it.

I try to attend as many of my son’s appointments as possible. I’m not talking about just the critical care appointments in the midst of an emergency. I’m talking about the appointments for routine medical care and services my son requires because of his CHD.

I also try to find out as much information as I can about my son’s CHD. I read the latest research, and I ask questions at appointments. No question is stupid. The only stupid question is one that goes unasked.

Finally, there are support groups for parents of children with CHD. These can be great for making connections with other CHD parents, but I find the best way for me to become involved is by “doing” things. Do you need someone to move something heavy for a CHD event or to make CHD fundraising calls? I’m your man.

My point is that even though you can’t fix your child’s CHD, there are things you can do to support your family. I’m doing the best I can for my family by being present. If that’s what’s needed for me to be the strong one, than they can count on me to be present.

For more information about parenting a child with a CHD, visit the Congenital Heart Public Health Consortium website.

*This post originally appeared on the Congenital Heart Public Health Consortium website.

Father’s Q&A Panel

Throughout June, the Pediatric Congenital Heart Association has been honoring Fathers by covering relatable topics through our guest blog posts. As we near the end of our series, we have four incredible dads of children diagnosed with CHD joining us for a Father’s Q&A Panel.

Thank you for taking the time to share with us! Please introduce yourself.

David Kasnic: I am a founding member of PCHA with a Bachelor of Science degree in Finance and International Business from the University of Tulsa, graduating in 1992. I have 15 years of executive management skills and a true passion for high growth businesses. Outside of work, I enjoy spending time with my family. I’m an avid bike rider and love the outdoors.

Justin Greer: I’m a software developer living just outside Madison, Wisconsin, and my wife and I have two children, a daughter and son. Our daughter, the oldest, was born with Tetralogy of Fallot. I enjoy working with technology, biking, hiking, camping, and attempting to do small woodworking projects, though like most fathers of young children, my spare time is mostly focused on the kids these days.

Michael Kim: I am a scientist and currently live in Miami with my wife and two little girls. My oldest daughter Sydney was born with total anomalous pulmonary venous return (TAPVR) in 2011.

Adam Smith: I’m husband to a wonderful wife and daddy to a hilarious little 3 year old daughter! I work in the SF Bay Area in 3D rendering technologies, and am a lifelong musician that studied music in college. I was born with a chest deformity known as pectus excavatum that required an open chest surgery, similar to an open heart procedure, as a teenager. I also underwent a necessary follow-up procedure six months afterward. As a result, I have a set of really awesome scars that match those of my daughter with CHD, who had open heart surgery at the age of eight months in order to correct both a VSD and mitral valve prolapse.

What was your reaction when you learned your child had CHD?

Justin: Fear. I had no idea what to expect, wasn’t sure if our daughter would survive, or how it would change our lives. I just knew that my excitement had turned to fear. Luckily we found out at a 20-week ultrasound though, so we could take our time to plan and prepare before she was born.

David: Since we had no idea until she was born, I went into a total “try to gather data and stay calm” mode of operation so I could make decisions.

Adam: I held a lifelong fear of genetically passing my own condition on to my future children, and was very relieved to see that my daughter was born with a normal chest! However, after learning of her two separate CHDs and that a correction would require an open heart procedure, I was saddened to hear the news. I quickly learned to appreciate my own procedures and scars though, so that if my daughter ever has troubles or insecurities with hers, she will have a daddy that understands her feelings and that she can talk to!

Michael: Sydney was not diagnosed prenatally so CHD was the last thing on my mind when we received her diagnosis. The thought of my one-day old baby having open heart surgery was unfathomable to me. I was absolutely devastated and I’m not ashamed to admit that I was a bawling mess.

What is one thing you’d tell a father who just learned his child has a CHD?

Michael: You have options. Get the best medical care possible for your child.

David: Trust, but verify. Ask as many questions as you want and need. Don’t assume you know everything about CHD and be a total pain in the butt to advocate for your child.

Adam: It isn’t your fault. Initially, after learning that my daughter had these issues, I began questioning whether or not my own history of genetics played any factor into it. Despite her condition being entirely unrelated to my own, this was a huge concern of mine. Even in the case where genetics may play a role, it is still not the fault of the parents. We are born how we are born, and there is nothing we can do to change that.

Justin: Everybody is different, but I would suggest spending time learning about the particular defect(s) your child has. Understanding our daughter’s heart defect, the surgical process for fixing it, and what I could do to help keep her recovery on track was beneficial for me.

In what ways do you cope with worry or stress from dealing with CHD?

Justin: Since our daughter’s surgery and recovery, we’ve been told we have about even chances of a) issues recurring around age 5, b) issues recurring sometime later in life, or c) never really having future issues. While that certainly concerns me, and I’ll always have a question in my mind whether I’m noticing any symptoms, I find I just have to avoid being like the guy who says, “There could be a lion outside; I might be eaten!” In other words, we live our life as normal and will deal with any future problems if they happen.

David: Pray is first and foremost. The next thing I had to do given my personality is to get involved with a group that is trying to advocate for CHD. This is where Amy and I decided to start PCHA. There wasn’t an organization out there strictly advocating for pediatric CHD issues.

Michael: Just being around my two little girls helps me deal with the stress. They are both so funny and silly I can’t help but laugh.

Has the financial burden of CHD costs affected you and your family’s life?

Michael: We have been very fortunate in that we have good health insurance that has definitely eased the financial burden of Sydney’s medical expenses. On the other hand, health insurance is so important now that it impacts many decisions in our life.

David: We had great insurance when we had our surgeries. Without it though, we would have been in trouble.

Justin: Luckily for us, insurance covered the majority of costs.

What do you wish you could have done differently with your child’s care, if anything?

David: I would have questioned more of why she was having such a hard time getting off the ventilator, more background of Transposition/VSDs, outcomes, infection rates, etc.

Michael: There was a point where Sydney’s health was declining and we couldn’t get a clear answer as to why. Had we listened to our gut, I think we would have been more aggressive in trying to seek a treatment. We were finally able to figure out the problem and get her the appropriate help only because of the persistence of Sydney’s cardiologist. It was definitely a close call.

What has been your biggest struggle in dealing with CHD?

Justin: Even though our daughter’s surgery happened when she was 3 months old, there’s been a lasting impact on our “freedom” that I didn’t expect. For at least the first year of her life, we had to keep our daughter pretty protected from getting sick, couldn’t leave her with babysitters, and had to deal with strict medicine and feeding schedules, etc. As a result, even now our daughter doesn’t do well with going to the nursery at church (and gets sick any time she does go), we can’t do a babysitter at bedtime, and have needed to forgo some family activities like camping. I know all these will get better with time, but for now we still have some limitations.

Adam: I found the most trouble in the time leading up to my daughter’s procedure. Despite the fact that my daughter was under the care of a world class medical team, it was still difficult to place her in their care, especially on the day of the procedure. Despite all of my research early in the process in regard to surgical success rates and other topics, I still dwelt a bit on the negatives.

David: From my perspective, we trust God is going to take care of her and it’s really up to him anyway.  We continue to provide care through our great medical care here at Children’s Colorado. Where I struggle is in the advocacy space of educating more patients, parents, providers and officials that we need to do more for CHD related issues. This means more funding, research, devices, etc.

Michael: We spent the first few years of Sydney’s life hoping she would be “fixed”. This just led to more anger and frustration every time a new problem would arise. The biggest struggle for me was accepting the fact that she will never be truly “fixed” and that she will likely have health issues for the rest of her life. Ironically, this change in perspective has made dealing with her CHD more manageable as we have learned to celebrate the little victories.

In what ways have you supported your family with the impact of CHD?

Adam: I made it a goal of mine to not miss a single appointment of my daughter’s. This began as soon as we learned of her condition, and I have persisted with it to this day. Although I have a heavy travel work schedule, I schedule EVERYTHING around my daughter’s appointments. My hope is that both my wife and daughter will never feel alone as we work through this. I want to make every visit a family visit, not just a visit for my daughter.

David: I like to think through PCHA we are lending support to my wife and son but honestly it’s just as much for my mental support as anything. It’s still a very traumatic experience but the way we cope is to support the efforts of PCHA and others, hoping we can make a difference to my daughter and others.

Justin: Because our daughter, unfortunately, never went back to nursing after her surgery, I was, fortunately, able to share some of the night-time burden with my wife, regarding feeding our daughter and resettling her when she woke up through the night. This was especially important during recovery from surgery, when our daughter was doing tube feedings that took a lot of time.

Michael: My wife is a rock. I’m the emotional one. She supports me.

How do you handle disappointments from any physical limitations your child may have, especially when your child compares him or herself to peers?

Michael: Sydney had bouts of fatigue when she was younger, but thankfully, has had very few physical limitations since her stent placement.

David: We tell her God has a plan for her and it might not be in sports or something physical. Everyone has their talents no matter if they have CHD or not.

Adam: While it does not appear that physical limitations will be a factor for my daughter as she grows up, I am still prepared to share my own experiences with her if this ever does become a reality. As a teenager, I was forced to give up sports for my own procedures. This was a big disappointment, but it led me to discover all new loves in life – music and technology, both which turned into my career! If this becomes a real concern for my daughter, I hope to be able to make her understand that adversity often time leads us down an even greater path!

How do you prepare your child for questions or comments about scar(s)?

David: We have told her the story, had her learn what she’s gone through and the result has been a scar.  As a girl, she hasn’t shown signs of embarrassment but it’s something we continue to make sure she understands.

Adam: Drawing from my own experiences, I hope to teach her early on that our scars tell a story about ourselves. My daughter already understands that she and daddy both have a “stripe” and “dots” (scars from stomach tubes). Recently, she became concerned about these and attempted to wash them off. I quickly showed her my own, and let her know that we share some really cool scars. Sometimes she will trace her scar with her finger on her chest, and then do the same to mine!

Michael: One of my biggest fears is that Sydney will be bullied because of her scars. I tell her to never be ashamed of her scars because she is the toughest little girl I know. We also enroll her in sports and other activities that help build her self-confidence.

In what ways are you preparing your child to care for his/her heart into adulthood? 

Michael: Educating my daughter about her condition and the importance of regular visits with her cardiologist. As she gets older, I really want her to understand the science behind her disease so that she can be more proactive about her heart and her health.

David: Keeping her in care is the most important thing we can teach her for transition into adulthood.  We are very aware of the scary statistics of kids being lost to care into adulthood, we are teaching her how important it is.

In your child’s journey with CHD, what is the greatest thing he or she has taught you?

Adam: Not to complain. I have a couple lingering physical effects that have followed me through life as a result of my procedures (aches and numbness in a large area of my chest), but my daughter has not skipped a beat following her procedure. She literally worked and worked to begin crawling the very day that we brought her home from the hospital, only three days following the surgery! If she can do that at the age of eight months old, I should be able to do the same at thirty-four. I still struggle with this!

Justin: Throughout her medical issues, our daughter has simply taken any treatment in stride and continued on with life. She’s more content with her circumstances than most people I’ve met, so she’s a great reminder to me that there’s a lot more worthwhile things to focus on in life than a current annoyance or affliction. (Don’t get me wrong, though – she can throw a tantrum as well as any toddler!)

Michael: After Sydney was released from the hospital, I would hold her for hours just because I could. She taught me that life really is precious and every moment with my girls should not be taken for granted.

David: Every child is a special gift from God but her story taught me to be trusting of our faith and to rely on God for guidance. I thought I could “fix” everything and I really had to let go of that and give total trust to God. I think back about the experience on a weekly, sometimes daily, occasion and get very emotional about the process and experience. I once asked my wife the question, “am I ever going to be able to talk about this without getting emotional about it?” Her answer was “do you ever want to get to that point?”  She was right, if I ever get cold about the experience and non-emotional, that means it probably doesn’t mean as much to me anymore so I’ve tried to keep that emotional connection strong and be vulnerable.

Thank you all for your insight and words of encouragement. If you’d like to join dads, parents and those affected by CHD help conquer CHD, become a part of the PCHA community by signing up to join our network, and remember to follow us on Facebook!

A Letter To My Son

PCHA wishes all dads a Happy Father’s Day! We’re happy to share this letter written by Nolan Chenevert, who celebrates his second year as a dad to his son Barrett “Bear”.

Dear Barrett,

I remember so vividly how excited I was when your mom first told me that I was going to be a dad. I also remember how excitedly terrified I was the first time I held you. You were now something that I had to take care of, care for, and teach (thankfully, Mom is here to help!). I was officially a dad, your dad! My heart was so full and my mind was racing with all of the possibilities that your future held.

After a very moving and exhausting day (especially for mom!), things turned around quickly. You turned blue, were having trouble breathing, and they wanted to transfer you to another hospital. It was like I had just been repeatedly punched in the gut. I ran the three blocks to where they had taken you. I stopped in the hallway outside your room and froze. You were right there, but I couldn’t go in or talk to you, I couldn’t do anything for you. I’ve never felt such an incredible feeling of being so powerless. A team of nurses and doctors had your incubator surrounded and when I was finally able to see you, I noticed all of the tubes, wires, and tape that now covered your body. I just sat there in that hallway, trying to convince myself that this wasn’t real, that you were going to be just fine, that your mom and I were going to be taking you home soon. Your plane had finally arrived and it was time for you to get on it, without me.

IMAG0576

Two major heart surgeries, multiple procedures, and dozens of doctor appointments later, you’re here doing exactly what I imagined you would be doing. Your first day of life gave me such a wide range of emotions that it might seem like the days since would be boring, but every day is its own wild ride. I get significantly less sleep than I ever imagined I would have, but I can’t wait for my first hug in the morning. I shake my head when you get into one thing after another, but I love the smile you get when you’re having so much fun. I get to pick up toy cars and dinosaurs just to get them thrown right back out again, but you are learning to help. All of the trade offs are worth it, because you are here.

Today, I feel the greatest pride when I get to show you off and brag about how great you are doing. Being a parent is a feeling that is unparalleled by anything else I’ve ever experienced.

Throughout my life, I have always looked forward to celebrating Father’s Day with my dad.  We would always get together with your Grandpa and spend the day trying to do things we thought he wanted to do to celebrate him. I have nothing but happy memories of Father’s Day, both as a son and grandson, but now as a dad. Last year was my first Father’s Day with you and I’ve determined that it isn’t just about being celebrated by others for being a dad. It is just another day to celebrate the fact that I get to be your dad.

I couldn’t be prouder to be your dad. I love you!

Dad


12004727_10106681235387660_8976356233192569832_nNolan lives in Duluth, Minnesota with his wife Jess (Volunteer Social Media Coordinator for PCHA), their son Barrett “Bear” and their dog Bailey. Barrett was born with Transposition of the Great Arteries & Coarctation of the Aorta. Nolan is an elementary school teacher currently teaching 4th Grade. Nolan enjoys baseball, golf, playing guitar, kayaking, and spending time with his family.

A Father’s Loss, and Life After

As Father’s Day approaches, PCHA would like to acknowledge fathers, and all parents, who have lost a child. We are privileged to have Trey Flynn share his story on loss and life after. 

We’ll never forget our child’s last breath.  No matter how hard we try and create a new and happy ending in our dreams, the pain is still fresh on a wound that will never heal.  On January 5, 2014, Holden Joseph Flynn lost his battle with CHD while awaiting a heart transplant.  His last breath ending 2 years, 2 months and 26 days after his first.

We learned of Holden’s diagnosis at his 20 week ultrasound, and spent the next 18 weeks mentally preparing for the plethora of testing and intervention that the medical professionals assured us would exist. By Holden’s 14th month, he had already undergone four operations to repair a distressed, broken and inevitably failing heart.

I am his father, his protector, yet so many of my days left me feeling as if I was powerless.  Nicole and I went through every procedure hoping and praying that this one would be the one that fixed everything. It didn’t matter that we knew that those sort of results weren’t possible, it was the principle. We were there for every hospital stay, every needle, and every drug. We felt every scream, every cry, and every tear. Eighteen hour days in the hospital gave us more than enough time to try and push the positives. That’s all we had.

In a split second, CHD took two very positive and upbeat people and destroyed every bit of being we had. The days, months, years (and it’s sad to say, that word…years) have been just as difficult. Not an hour goes by where we don’t think about Holden. What he was. What he would have been.

Nicole and I had always wanted numerous children. The exact number was always up for debate, but numerous is a great term to adequately describe it. Numbers aside, we’d dated since 1999, and after years together, the plan was in place. Holden was the first.

Then 2014. We weren’t sure we could do it again. Discussions led to anxiety, and even when I found myself trying to play the tough guy, deep down I was just as anxious as Nicole. What if? What if our next child also has CHD? What if we have to spend our days drawing medications? What if we’re making frequent and uncertain runs to the hospital?  Could we do it again?

Questions loomed larger than answers. Maybe that’s because we didn’t want to have to put a child through that, and somewhat selfishly, ourselves too.

In our own ways, we loved being parents, and we wanted to cover those question marks in our minds. We met with doctors. We read stories. We talked to other families. Deep down we knew were working our way to having another child. CHD already took Holden, we couldn’t like it take those plans from us too.

I want to be that dad who gets to take his kid to his or her first ballgame. Teach his kids how to respond to that inevitable injury that comes from DIY type housework. That dad who is googling advanced mathematical theory to help their kids stumble through their homework. I just want to continue being some sort of pseudo-Super Dad, as nerdy as that might sound. I miss it.

On October 11, 2015, we found out Nicole was pregnant with our second child. Oddly enough, that would have been Holden’s fourth birthday. It was only a few days before that she tested negative. We were ready to continue our journey.

So, what about his heart? Months went by with those concerns. Even with modern medicine and ultra-sound-y scans you can’t tell when he’s the size of a grape. In February, we had that granddaddy of all heart scans with the very same doctor who relayed the jaw dropping news of Holden’s condition at that ultrasound in 2011.

“Everything is good.”

I couldn’t help but jump up and give him a giant hug, as my wife emphatically caught the moment on her camera. We know that those results aren’t 100%, but they’re pretty close, and besides…I unfortunately know four chambers and two valves when I see it on an echo.

So, back to being parents.

Before Holden we were two young adults, who enjoyed going to concerts, or sporting events, or dinner without having to plan. Like any child, Holden changed that. Happy hours turned into dinner time, baths, and Goodnight Moon. The weekends, once filled with trips to the beach were now spent pushing a stroller around the lake or stacking Duplo blocks. We loved every minute of it, as it was just such an awesome experience.

In Holden’s passing, we unwillingly were placed back in that original lifestyle and we didn’t want to be there. We wanted a few interrupted nights to go with the dirty diapers and canned beets.

So when it finally came time, when we finally said we’re ready, those CHD issues dropped back. Could it happen? Sure. It’s a disease that has very little answers. We don’t know why Holden was born with a broken heart, but we did know two things. I love being a father…and between Nicole and I, we are darn good at the whole parent thing. CHD be darned, we were ready.


trey-flynn (1)Trey Flynn is an attorney in Orlando, Florida. He, his wife, family and friends created Yellow Brick Road: The Holden Flynn Foundation in July of 2014. The Foundation focuses on Congenital Heart Disease and deluxe hospital friends wagons.

Making the (Heart) World a Better Place

PCHA is pleased to welcome back recurring guest writer Chris Perez for our Fathers Blog series.

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.

A Story and a Scar

Throughout June the Pediatric Congenital Heart Association is honoring Fathers by covering relatable topics through our guest blog posts. To kick off this month, we’re honored to have writer Rob Hart share his story.

Thirty minutes after my wife and I walked through the front door of Richmond University Medical Center, our daughter Abigail Joule was born. No anesthesia, ten minutes of pushing. Nurses were stopping by to meet Amanda. She was like a folk hero. This was on January 18, 2015. Two days later, the morning we were to be discharged, our pediatrician marched into the room and announced he heard a heart murmur, and even though it was probably nothing, we needed to see a cardiologist. We set a land speed record for hospital discharge. Amanda was signing a form with her right hand while she was getting a TDAP vaccination in her left arm.

“Bohemian Rhapsody” was playing in the car and I took that as a good sign. Twenty minutes later we were in the cardiologist’s office. He repeated what the pediatrician said. That it was probably nothing. A small hole that might resolve by itself. We put our tiny new baby on the crinkle paper and the doctor pressed the plastic wand to her chest. An hour later we walked through the door of our house and I made it as far as the steps leading to the second floor. I held my daughter tight to my chest and cried. Shaking, couldn’t breathe, coming apart crying.

She was five pounds, two ounces. Barely bigger than my forearm.

Tetralogy of Fallot is a cyanotic heart defect that occurs in about 400 per million live births. Four abnormalities are present. First is a narrowing of the pulmonary valve, which reduces blood flow to the lungs. Second, there’s a hole in the wall that separates the two lower chambers, causing oxygenated and deoxygenated blood to mix. Third is an overriding aorta—a normal aorta branches off the left ventricle. Here, though, the aorta is shifted to the right, so it receives blood from the left and right ventricles. All these things serve, over time, to reduce the amount of oxygen in the blood. Finally, because the heart is pumping harder to keep oxygen levels up, it causes the wall of the right ventricle to thicken. This can cause stiffness and eventually failure.

The cause is unclear, and it can only be repaired with open-heart surgery, usually within the first year of life. It involves widening the pulmonary valve, sealing the hole between the chambers with a patch, and trimming muscle from the right ventricle. The surgery carries a low risk—five percent perioperative mortality. When successfully repaired, it carries little impact on the ability to live a normal life. Shaun White, the Olympic snowboarder, was born with Tetralogy of Fallot, which required three surgeries to repair.

This is what happens when you have a baby with a rare congenital heart defect: You have to decide who to tell. First off is parents, obviously. Then employers and close friends. You don’t put it on Facebook. But you do tell your agent and your publisher. With your first novel coming out in June, and with so many moving parts in the publishing process, you need to let them know things are about to get unpredictable. That’s the e-mail, the one going out to people you don’t know on an intimate level—people you’ve never seen in their pajamas—that the reality gets too heavy, and you need to hold the baby for a bit to calm down.

You worry how this is going to impact the release of your novel—whether you’ll have time for promo of if you’ll have to cancel your launch party—and then you hate yourself for thinking that. You read about Tetralogy of Fallot on the Internet. Then you stop reading about it because you figure it’s better to get information from an actual doctor. That lasts for a few hours, and then you go back to reading about it.

You try and get used to your baby being tinted slightly blue. She’s cyanotic, given the lower level of oxygen in her blood, so she’s never pink the way a baby is supposed to be pink. And it gets worse when she’s cold or crying and can’t catch her breath. You never get used to this.

You don’t sleep, even more than you wouldn’t have. You drink a little more than you would have, then you hate yourself for drinking because what if you need to drive to the hospital?

Every time you go to the doctor, you think they’ll have screwed up somehow—that they read the echocardiogram wrong, or there was some dirt on the stethoscope, and she doesn’t have it, no harm no foul. Every single time.

You spend a lot of time sitting in the nursery with the lights off, letting your daughter nap on your chest. She is so small. So perfect and yet not-perfect.

We met with the surgeon on a wet, cloudy day, at NYU Langone in Manhattan. He sat us down in his nearly-empty office overlooking the East River. He opened a binder full of diagrams of heart defects, the hearts shaded in deep blues and reds. At the Tetralogy of Fallot page, he said, “This is the least scary page in here.”

What he meant was that the surgery had a high success rate, and otherwise there didn’t appear to be any other complications. The surgery would happen when it needed to happen. Sometime within the next few months. It would depend on a number of issues: Abby’s oxygen levels, how well she was putting on weight. The latter was an issue. She had fallen under five pounds by her first official visit with the pediatrician. Every time we brought her in for a check-up, she failed to meet her goal weight. The pediatrician called it “failure to thrive” and it was probably maybe related to her heart condition.

So we fed her, a lot. She puked, a lot. We switched from regular burp clothes to more robust towels. Every time we went in to get her weighed, it was a guessing game. “It’s been this many days and the doctor wants her to put on an ounce a day so she should weigh this much…” She always weighed under that number. Which was a great way to make us feel like we were failing as parents. But in time we got used to the frustration and the constant feeding, to the point where things almost felt normal.

And then, one day in March, we went in for a routine check with the cardiologist—two months out from when they were thinking they’d maybe do the surgery—and her oxygen saturation, which should have been between 95 and 85 percent, was hovering around 70 to 75.

A few hours later, we were in the hospital. When the medical team wheeled her out of the room to take her down for pre-op, she had been sleeping, and my wife asked if we could say good-bye. We took turns kissing her on the forehead, and she woke up and looked at us, and even remembering that is hard. We ate a big diner breakfast across the street from the hospital. We thought about taking a walk but it was too cold so we went to the waiting room. I can’t even remember how we passed the time. It just passed.

Six hours later and we found out that she was too small for the full repair. The surgeon said he could have tried, but it would have increased the risk of complications in the future. So they put in a shunt—a new pathway for blood to travel so her oxygen levels would increase. That would allow her to grow more before they tried again.

We had to come back sometime in the next few months. I knew the surgeon did his best but still I wanted to hit him.

This is what happens when you have a sick baby who’s still sick after one open-heart surgery:

When you want to pick her up, you scoop her up under her butt and upper back, because for six weeks after surgery, her breastbone is healing. Picking her up under the arms could put too much pressure on it and cause it to crack. You have recurring stress dreams about picking her up under the arms and cracking her breastbone. You’re back to not sleeping.

You get a pile of medicines she’ll need to take until her next surgery: Baby aspirin to thin her blood, Enalapril to keep her blood pressure down, Furosemide to prevent fluid retention, Omeprazole for acid reflux. You come up with carefully choreographed feeding schedules so she’s less likely to puke them up.

You get used to explaining Tetralogy of Fallot. Because the day before her surgery you made it “Facebook official.” For as conflicted as you feel about that, at least it’s efficient. And you’re tired of telling everyone things are fine, because things aren’t fine.

You get invited to read at a bookstore in Texas when your novel comes out in June. The next surgery is tentatively scheduled for August, but you can’t commit to travel, because what if it gets moved up? You get frustrated, then hate yourself for being frustrated.

As you get closer to the second surgery, you find yourself with more time to reflect. The first one happened so quick it felt like it was over just as soon as it started. Suddenly you’ve got an elective date that’s weeks off. You know what to expect and you’re not sure if that makes it easier or harder. You look at your schedule—columns to write, deadlines to hit—and you put them aside so you can sit on the play mat with your baby and laugh and clap because she’s figured out how to roll over.

You do this because you know a friend of a friend who died after going in for knee surgery, and you have to accept that these moments with your daughter might be the last time you get to spend with her.

The day we took Abby in for her second surgery in August, we handed her to a lanky German anesthesiologist who kissed her on the cheek, and we didn’t cry for nearly as long as we did the first time. We ate a big diner breakfast across the street from the hospital. We took a long walk crosstown to Barnes & Noble. My book had been out for two months at this point. We found a few copies tucked in the fiction section and my wife re-arranged the shelf so they were facing out.

We went back and sat in the lobby. I tried to read The Things They Carried by Tim O’Brien. I kept having to go back to re-read the parts I glossed over. After six hours, about the time they told us it would take, we were getting antsy. Someone was supposed to come out and get us, bring us into the room, wait for her to arrive. That’s what happened last time. Every few minutes, we checked the clunky phone the nurses had given us.

And then the surgeon appeared, smiling.

Sometimes with this surgery they can’t preserve the heart valve, which necessitates a replacement later in life. They preserved it. Her pulmonary arteries were still a little narrow, and they might grow, or they might require widening at some point in the future. But that can be done with a balloon in a catheterization laboratory. There are no guarantees in life, but the chance of her needing another open-heart surgery is extremely low.

This is what happens after your daughter’s second open-heart surgery, when she gets a clean bill of health: You can make travel plans again. Maybe a book tour when the second novel comes out in February. You can plan things.

You realize this and you cry, again, but it’s not sad crying, and it’s not even happy crying, not really. It’s that last bit of fear and uncertainty and anger getting wrung out. It’s like a torn muscle healing itself, getting stronger. It’s knowing that you’ve reached your emotional limit, that you’ve faced down the worst thing you’ve ever experienced, and you got past it. With the love of your wife and your family and your friends. For this beautiful little girl who is now perfect-perfect, even though she already was in the first place.

Things go back to normal, so that when she’s screaming at you while you’re trying to eat dinner, you just get flustered like any normal parent. But then you take her up to bed and lay her on the changing table and she is so pink. Pink the way a baby is supposed to be pink. You trace the mottled line running down her chest, and touch her lips and fingertips and ears, and the little point of her tongue that she sticks out at you. She is flush and full of possibility.

You realize that this terrible odyssey is now nothing but a story and a scar. And you are thankful in ways you didn’t know were possible.

Rob’s story originally appeared on The Good Men Project


Hart_RobRob Hart is the author of New Yorked and City of Rose. His short fiction has appeared in Thuglit, Joyland, and Helix Literary Magazine. His non-fiction has appeared at Salon, the Daily Beast, and the Powell’s bookstore blog. He lives in New York City with his wife and daughter. You can find him on the web at www.robwhart.com and @robwhart.

Mothers Blog Series Recap

Your voice matters. For the month of May, PCHA recognized mothers of children with CHD through our Mothers Blog series. The fight to conquer CHD is strengthened by the involvement of all of those who share our mission. It takes a community coming together around education, research and awareness to make an impact. Volunteer, join our advocacy network today, and connect with us on Facebook! In case you missed a post, below is the full Mothers Blog series:

Mother’s Q&A Panel: Mothers of kids with CHD answer relate-able questions

A Thank You Note to Our CICU Nurse: Amy writes a heartfelt letter to her son’s nurse

Expecting a Rainbow Baby: Pregnancy After CHD: Jen tells her current journey of pregnancy after CHD

Prevailing Over the Unexpected: Jess shares how CHD has shaped her perspective on motherhood

Finding the Spirit of Mother’s Day, Every Day: Margaret speaks from experience on relieving stress

A Mom’s Promise of Hope: Tori shares about finding hope after loss

Mamas, May the FORCE Be With You!: Jennifer uplifts mothers using the F-O-R-C-E