Donor Remembrance Day is an observance day to honor and celebrate Donor Heroes who have given the gift of life through organ, eye and tissue donation.
We are fortunate that recipient dad, Joseph Hillenburg has offered to share his very personal story and connection to the donor side. We encourage you to write to us with your submissions at hope@transplantfamilies.org with ”Hope submission” in the subject line.
**Please be advised that if you are a family that is new in their journey, the following may be difficult to read. The following is a heroic tale of donation, which sadly sometimes ends in tragedy.
Giancarlo’s Story of Donation
Foreword
Joseph Hillenburg, recipient father
My son Benjamin received a heart at a very young age, and so as a transplant dad, I have a very direct connection to organ donation. It’s a story I’ve told many times, and we live that story in a (thankfully more relaxed) manner every day. However, our family has other connections to donation and transplantation, including family and friends. The story of one friend from my hometown is one that hit me particularly close.
Giancarlo Castrataro and I were young boys when we met at around the same age as my son Ben is now (age 8). As two introverted computer geeks, we shared many stories as we grew up. This includes hanging around in the same cliques, being regular fixtures in our school and public libraries, and being members of a local computer club for Commodore-Amiga users. Back when nobody knew what the Internet was, Giancarlo (known to all of his friends by his nickname “Junko”) and I spent hours learning about complex computer networking, even before we hit our teenage years. I got to know his family well, and looked forward to mooching off family dinner as his mother was a better (or at least more well-rounded) cook than my own.
We were later in the same Computer Science classes in college, talking frequently, albeit usually online considering our busy schedules. I moved away from Indiana at that point, and we didn’t get a chance to chat much until I got married. I asked Giancarlo to be a groomsman, and his daughter Megan was our terribly shy flower-girl. We were in frequent contact after that, with Giancarlo and his wife, Jaime, closely following for and being supportive of our transplantation journey.
Unfortunately, the same year as my son’s transplant, Giancarlo suffered a tragic accident, and one of my closest friends, with a relationship spanning decades, was taken from his family in just a few days. He was taken from me, too–losing Giancarlo hit me and some of our other friends like a brick wall and affected me much more than when my father passed and became a donor. This was a peer, someone my own age, and someone who had made my life more livable. Upon hearing of the situation, a group of us from our hometown (all of whom knew Giancarlo from the same time period) immediately drove to Indianapolis to say what we knew would be “goodbye.” We took pains to be sensitive to Jaime about the situation, but it was clear that she knew where things were headed. All we could do was support and thank her for agreeing with her husband’s wishes.
While I like to think that it was my son’s transplantation story that inspired Giancarlo to be an organ donor, I know that he would have wanted to donate of his own volition. Some people don’t need any motivation other than knowing that organ donation is the right thing to do.
Our Family Donation Story
Jaime Castrataro & Megan Castrataro, donor mother and daughter
Organ donation is one of those subjects that goes by the wayside until it directly affects someone you know or someone you love. This is our story of how being an organ donor family has impacted our life and healing process.
As winter nears, many people love taking advantage of unseasonably warm temperatures to accomplish tasks that got delayed over the summer and fall season. Back in November 2012, Indiana saw some very warm temperatures in the weeks preceding Thanksgiving. My husband, Giancarlo Castrataro, was a systems analyst for Eli Lilly and had some unused vacation time to burn. As is the tradition for our family, we always host the holiday celebrations in our home. Giancarlo and I were college sweethearts and we married after we both graduated with our bachelor degrees in 2001. Our first married couple purchase was a new home that we had built in early 2001. The exterior of the home was in need of some cosmetic maintenance after 11 years. Giancarlo had been using his vacation to do the labor himself, as we were not a wealthy young couple. We had two children at the time – Megan (11) and Nicolo (2).
On the Saturday before Thanksgiving in 2012, Giancarlo set out to continue painting the trim on the exterior of our two-story home while I took the kids to some Holiday craft fairs in the area for shopping. In the early afternoon hours, I received a text from one of our neighbors (she also happened to be our babysitter) asking if Giancarlo was ok because she heard he had been in an accident. This was news to me, so I tried calling Giancarlo to see how his progress was. No answer. I began to worry, and continued messaging back and forth with the neighbor. She was able to find out that an ambulance had been called to the house and had taken Giancarlo to the hospital. At this point, I still had not received a phone call from any medical authorities. Immediately I drove to my parents’ house because they only lived five miles away from us. So many scenarios were running through my head at the time. What kind of accident? Did he break his arm? Did he break his leg? Did he break multiple bones? It seemed like time was at a standstill. I couldn’t just sit and do nothing so we started calling every hospital in the area. Nobody had record of him. My mom suggested we drive to the hospital that had a trauma unit, so my dad stayed at home with the kids.
During our drive to the hospital I called Giancarlo’s parents who lived in Bloomington, which was about an hour away. I informed them that he had an accident and I didn’t have any information so they started driving towards Indianapolis. As my mom and I got close to Methodist Hospital, I finally received a call from medical personnel. They confirmed that he was brought to the hospital we were heading towards and instructed us to advise the front desk when we arrived. When we arrived at the hospital, we were taken into a room that was set up like a living room in someone’s house. After a short while, a massive team of doctors entered the room. It was at this point I realized the severity of the situation.
The doctors advised me that Giancarlo was brought by ambulance to the Emergency Room trauma center because a neighbor had witnessed him fall from the roof of the house. When he fell, he landed head first. As they were talking to us, trauma doctors were currently trying to stop bleeding from a main artery in Giancarlo’s head. They promised I could go see him as soon as they were able to get the bleeding to stop. The staff of doctors advised us that the situation was very grim and his injuries could be something that he would not be able to recover from. The team of doctors had left the room as Giancarlo’s parents arrived at the hospital. Close friends had also started to arrive as the news was spreading around our circle of friends. The room was quickly filling with loved ones. Giancarlo’s bleeding had improved, so medical staff came to our room and allowed me and Giancarlo’s mother to go see him.
I was not at all prepared for the scene that I walked into. Immediately, Giancarlo’s mother started screaming and crying so the staff escorted her back to the room. As I looked around in disbelief, I saw Giancarlo laying with blood-soaked towels surrounding his head. I couldn’t see any part of his face because it was covered. There were machines that were pumping blood into him as fast as a heart would pump blood. He was hooked up to so many machines. There were so many beeping sounds. It was so surreal; I didn’t know what to say or how to react. I simply just cried and I told Giancarlo how much I loved him. The trauma staff advised me that he needed to go into surgery immediately because they had to cauterize the artery in his head to fully stop the bleeding. I had to consent to the surgery, which of course I did.
When Giancarlo went back to surgery, we moved to the waiting area. Again, it seemed like time was at a standstill. Giancarlo and I had many family members and many friends, and the most efficient way of asking for prayers in my opinion was through social media. Although there may have been a disagreement about the impersonal delivery of such news, I did not have it in me to make all those calls and explain the situation over and over. I was 34 years old and my husband was 35. Things like this weren’t supposed to happen. I was still in shock. Through the power of social media, word got out and thousands of people were praying for Giancarlo and his recovery. I didn’t know how our life was going to look, but I knew we would fight through anything that stood in our way.
After the surgery, the doctor came out and gathered a few of us and took us into a consultation room. When we walked in, they had images of Giancarlo’s head on the screen. The good news was that they were able to get his brain bleeding stopped. In the fall, he had suffered a broken collarbone, but no other bones below that were broken. The bad news was evident the minute anyone without a medical degree looked at the screen. His skull was cracked in two. The doctor said that there was no way a fracture of that magnitude could be repaired. He said that eventually his brain would swell, and at that point, there’s nothing that can be done. If we kept him on life support, he would be a vegetable. They noticed on his driver’s license that he was an organ donor and mentioned that option. At the time, that was something I couldn’t think about. My life had been turned upside down in just a matter of a few hours that day. It was Saturday, and I said that’s a decision I didn’t want to make until Sunday. We agreed that we would stay the course for the time being, and that they would move him into ICU.
The representative from Indiana Organ Procurement Organization (IOPO – now Indiana Donor Network), introduced himself to me when we made our way into the ICU. I again expressed that I did not feel comfortable making a decision like that in the state of shock I was in at the moment. I knew that friends and family were traveling from out of state, and I just wanted to hold out hope that maybe the doctors were wrong and Giancarlo would prove them wrong because that’s what he was good at doing. I spent the entire night at his bedside. He had sixteen bags of fluids going into his body, he was on life support, and there were so many beeping noises. To this day, I still have flashbacks of all the beeping noises. In the early morning hours, they took Giancarlo back to do a test for brain activity. It showed drastic slowing, and the swelling in his head was starting to get worse. Looking at him, he was unrecognizable as the person I loved and married. I had not showered and I wanted some clean clothes, so my mom suggested driving me home so that I could say hello to the kids and do just that. We had been away from the hospital for about 20 minutes when the ICU nurses called and told me that Giancarlo’s vitals had crashed and that he was maxed out on meds they could give him to keep his blood pressure down. At that time, I knew the decision that I had to make and the sacrifice my family was about to make. I knew that he was waiting for me to leave so that he could try to pass without breaking my heart.
As I sat down with the IOPO representative and went through the interview questions, I didn’t know how to feel. I was literally signing someone’s life away. I was saying “Sure, take him.” Survivor’s guilt is real, and it’s something you never quite get over. There’s always that what if question that lingers in your thoughts, especially when you see unexplained miracles that happen in the world. The interview questions were very detailed, and the interview process took well over an hour. Afterwards, it became a waiting game of what would happen next. Friends and family continued to trickle in and say their goodbyes on Sunday. Tearful reunions, tearful goodbyes. We had to wait 24hours between brain scans because of the dye that is used, so the only thing I could do was sit by his bedside in between visitors. My family brought my children up to the hospital so that they could say goodbye to their father. My daughter Megan was 11 at the time and was fully aware of everything that was going on. The toughest visitor was my son Nicolo, who was 2 years of age at the time. We took him in the room, and told him that his daddy was in the bed. He looked and laughed a little and said “That’s not my daddy, he looks weird.” He didn’t comprehend that would be the last time he would see Giancarlo. After Nicolo left, the ICU nurses and the IOPO representative said that was the saddest thing they had seen in a while. There was not a dry eye on the unit floor.
Monday morning at approximately 4 AM, Giancarlo was taken back for another scan for brain activity. When the doctor came back to give me the results, he was declared brain dead and they were preparing to find donors for his organs. I knew to expect this moment, but hearing it was difficult. It didn’t soften the blow. I had just been told that my 35-year-old husband was dead. The father of my two children, my college sweetheart. We had been together for fifteen years. What was I going to do without him? Unfortunately, Giancarlo’s heart and lungs could not be salvaged because he had stopped breathing at the scene of the accident and in the process of reviving him, those organs had been damaged. Giancarlo was able to donate his two kidneys and his liver, along with other tissues. Less than three hours later, donors had been located for all three organs.
The organ procurement team was prepping him for the surgery, and they came to the room to get him. We all had our tearful final goodbyes and I was allowed to escort the team to the surgery doors. When we got out to the hall, the team got notice that the surgery was postponed. It turned out that one of the recipients was local and that there wasn’t enough blood at the hospital because Giancarlo had gone through so much the day before. So, they wheeled him back into the room and hooked him back up to all the machines and his sixteen bags of fluid. Everyone had said their goodbyes, so it was just Giancarlo and me in the room alone. I laid my head on his chest and I just cried. It all hit me at once that I lost my love, my husband, my family unit. I can’t explain it, but at that moment, I felt such a huge relief lifted off my chest. It’s like someone was there with me telling me everything was going to be ok and that I made all the right decisions that weekend. That moment will forever be with me. It’s an experience that I will never forget.
After the short delay, the organ procurement team came back and we walked down to the surgery area together. When the elevator doors opened, it was like a scene out of a movie. There was a team of people lined up with coolers at the door. Each one of them gave me a heartfelt thank you and I gave Giancarlo one last kiss goodbye. Being able to see that was magical, especially after everything we sacrificed that weekend.
My story with IOPO doesn’t end there though. During that first year after our loss, we were invited to family events for organ donor families. The kids and I made memorial candles, memorial Christmas ornaments, memorial wind chimes, and got to visit the donor wall where Giancarlo’s name was engraved. As a donor family, I truly feel like the gift of life we had given to others did not go unappreciated by the organization. They sent grief books and packets to the children, they sent honorary medals to the kids and special IOPO teddy bears. To this day, we still get invites to yearly events for donor families.
For my oldest child Megan, grieving was tough. She was always daddy’s girl, and being old enough to understand the situation made the grieving process harder and longer. She was so proud to call him her father and always stood beside him, no matter the endeavor. Currently, she is in her freshman year of college studying informatics, which is linked to Computer Science, Giancarlo’s field of study for which received his Bachelor’s degree. At a young age, he sparked an interest in her with technology, and gave her unwavering support throughout her childhood. Everything she’s worked for since his passing has been to honor his memory. Knowing that her dad allowed other people more time with their loved ones definitely had a positive influence on the grieving process.
Choosing to be an organ donor family is what helped me heal the most. Giancarlo’s story is so tragic and heartbreaking. When I tell it to strangers, all they can say is “I’m sorry.”My reply is always “Don’t be, he saved three people’s lives that day.” Giancarlo would have given anyone the shirt off his back, so it’s only appropriate that when his time was up, he gave the gift of life. I only wished that every family that suffers a loss so sudden and tragic chose to be a donor family so that others could live. There’s no better gift than the gift of life and hope.