Caralynn Mary Titter entered the world on November 24, 2010. What a beautiful gift and perfect addition to our family. Big Brother Ryan embraced his new role like a champ, and our family puzzle was complete.
Caralynn Titter, June 10, 2011
“Your daughter needs a new heart.”
It Rocked us to our Core
We heard those words on June 9, 2011, when our little girl was only 6 months old. It rocked us to our core. Things like this happen to others, not to us. How in the world were we going to get through this? How could we ever face the reality that our daughter’s heart, the one we made for her, would be removed from her tiny body and replaced with an unfortunate stranger’s? The following months were very difficult for us as we struggled with the fear and uncertainty of Cara’s future. Her cardiologist was deeply concerned about the intensity of the disease and scheduled Cara’s next heart catheterization for October 27, 2011.
Our Nightmare had only just Started
By that time, the disease had progressed so rapidly Cara was immediately admitted to A. I. duPont Hospital’s Cardiac Intensive Care Unit. Cara was officially placed on the heart transplant list at 7:48 pm on October 28. Our nightmare had only just started. Cara received a donor heart after an incredibly short wait of 12 days only to discover that the donor heart did not function properly in Cara’s little body. Cara was placed on ECMO, a heart-lung bypass machine, and monitored closely. After it became clear that this heart would not work properly, she endured another procedure and was placed on a Centrimag right ventricular assist device and subsequently re-listed for another heart. We did our best to celebrate her first birthday, which also happened to be Thanksgiving, in an isolated hospital room.
The Berlin Heart
Less than a month later Cara was granted FDA compassionate-use approval for a pediatric device called the Berlin Heart. On December 15, 2011, Cara underwent another harrowing surgery to place a right-side Berlin Heart bypass machine in her failing body. Miraculously, Cara came through the surgery with flying colors and proceeded to gain enough strength that we were able to hold her for the first time just two days before Christmas. Christmas Eve and Christmas were spent apart as our time was divided between Cara at the hospital and her loving brother Ryan back at home. New Years, anniversaries, birthdays, and family time were much of the same. Each celebration brought prayers it would not be our last with Cara. Through her treacherous and painful ordeal Cara became a hero to everyone who knew of her amazing story. Cara’s blue eyes shone with an unearthly light even in the darkest of hours. The mere mention of her name filled hearts with inspiration and wonder.
Cara’s Second Heart
January 21, 2012 brought Cara’s second miraculous donor heart. This heart worked well from the start, and in true Cara fashion, she battled through those first tenuous days to emerge victorious and very much alive. Valentine’s Day was Cara’s last day in the CICU. She was moved to the cardiac floor early the next morning where we were allowed to stay in the same room with her twenty-four hours a day. Our motto emerged as “two steps forward, one step back.” Cara battled severe rejection for which she needed to endure added catheterizations and anesthesia. Her central line failed twice and surgeries followed suit. She also developed an aggressive wound infection after a routine procedure, causing her to once again endure heavy antibiotics. While her recovery was tedious and difficult, Cara was discharged from A. I. duPont hospital on March 22, 2012. What a joyous day! Cara came home on 17 different medications, continuous oxygen, a feeding pump, and a continuous IV infusion, but we were home.
Cara’s Amazing Strength
Cara continued to improve by leaps and bounds. Her strength was amazing and admirable. Her determination to succeed was evident in everything she did, and her spirit carried her family, friends, neighbors, prayer warriors, and strangers to new heights. Cara was chosen as the face of the Nemours Radiothon and was pictured on billboards and advertisements across the state of Delaware. Cara relearned to eat on her own, crawl, cruise on the furniture, use sign language, sit on a toddler bike, and generally command the household.
Our Battle was Over
Nothing could have prepared us for August 8, 2012, when Cara unexpectedly suffered a fatal cardiac arrest and died in our arms. Words cannot describe our grief. Just like that, our battle was over and others had begun.
Out of our family’s experience and the love we have for families just like ours a new chapter begins. As Cara’s parents, we are determined to support, help, serve, and love other families facing their own heart transplant nightmare. We are committed to walking side by side with families as they journey through the many phases and challenges ahead. The resources and support necessary for a family whose day-to-day lives have stopped are tremendous, and Heart of Hope- The Caralynn Titter Foundation aims to work closely with each family, their support networks and hospital personnel to ensure that each family’s needs are met.
