An Open Letter to Fathers
Your child’s diagnosis was a shock to a normal life. The struggles you will face are real and will present some of life’s greatest challenges. Yet, as a father, you will be presented with some very unique experiences that are often not as obvious or easily recognized by others. Furthermore, the support mechanisms and coping strategies to help you along this journey are not well established, leaving many to figure it out on their own.
Throughout pregnancy all of the attention is focused on the health of the mother and child. After birth, the mother’s instinct takes over to help protect and provide for a fragile child and the medical staff often defers to them as the best source of information. Thus fathers often feel sidelined and underappreciated in the care of their child.
Additionally, the typical fatherly role is to be strong and provide support, even when you are struggling yourself. It is not uncommon to hide your emotions, cover up your need for help, and struggle silently. Luckily, you are not alone, there are many other fathers who blazed this path before you. You are just as valuable in your child’s life as the surgeon who performs their operations. The role you play is unique and irreplaceable.
While this is not an easy road to travel and many find it difficult to express how they are feeling, continue to involve yourself in the process. Talk to your medical providers and ask questions without reservation. Find ways to support the best mom your child could have. Look for triumphs and joys every day, you will be surprised how many there are. Most importantly, take care of yourself to help provide the best care possible.
Those who have come before you can provide valuable resources and support. We have walked in your shoes and come through dark times, only to become better in the end. Loneliness is present early, but the heart community is strong and the connections made within it are unbreakable. We fathers are here and ready to support, please reach out when you are in need of help from someone who understands.
Kevin became a Heart Dad in June 2015 when he and his wife Kelsey welcomed their first child Kennedy. Kennedy was diagnosed with HLHS prenatally and has had both the Norwood and Glenn procedures. Interstage was extremely difficult, mostly due to continuous feeding issues, but Kennedy is now doing great - she is bright, energetic, and loves being outside exploring new things. The Mulvaney Family resides in Arizona and sees Dr. John Stock at Pediatric Cardiac Care of Arizona for Kennedy's ongoing care.
Trent joined in 2017 to help advocate for and provide resources specific to fathers. He has been actively involved in the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) since 2012, serving on the Parent Advisory Council and multiple work groups. Trent is a teacher with background in anatomy and physiology and mental health. Through his involvement the parent group at Nationwide Children’s Hospital, he worked to develop a mentoring program and has assisted with multiple studies relating to parent stress. Trent continues to explore new support mechanisms to help fathers as a way to improve care.
Travis joins Sisters by Heart as one our first Brothers by Heart. Travis become a heart dad in March 2012 with the birth of his son Cael. Actively Involved with National Pediatric Cardiology Quality Improvement Collaborative since 2013 he has served as a member of the Feeding Work Group as well as the ICU/Surgical Learning Lab. Travis holds a BA in Athletic Training, a Masters in Health Science and works as a Physician Assistant in Pittsburgh, PA. As a father Travis believes that heart dads play a vital role in the care of a child with HLHS. He lives in Butler, PA with his wife Tanya and children Cael and Adalyn.