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.
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.
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.