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!