Diego was born extremely premature, which resulted in multiple health complications, including severe jaundice. After being monitored in the NICU for 45 days and undergoing many tests, doctors determined that Diego had Alagille syndrome—a rare genetic condition in which abnormalities in the bile ducts damage major organs. In Diego’s case, the Alagille syndrome was in his liver.
Diego’s journey to finding a donor was long and emotionally challenging. After being put on the transplant list in 2009, an anonymous donor was willing to help in 2010. However, they were not a match and the donation fell through. On July 1, 2011, Diego’s mother sadly had a brain aneurysm and passed away. Without having any time to process this loss and grieve, Diego and his father Agustin were flown to Toronto to have the transplant surgery. While his mother’s liver was a match, doctors informed Agustin that there were many risks with doing the transplant as her liver was not viable; it would only be a temporary fix and would not help in the long term. However, as Diego was already under anesthesia, they proceeded with the surgery. A few days later, on July 4, 2011, they found a healthy liver match, and Diego underwent transplant surgery. Following the procedure, Agustin and Diego stayed in Toronto for a month and a half so that doctors could monitor Diego as he learned to walk, eat, and do many other things he had not yet been able to do.
Agustin recalled the roller coaster of emotions he was on during the whole transplant process. He felt the need to stay strong for Diego to take care of him, but after losing his wife, he was carrying a lot of stress all on his own. However, staying strong for Diego was helpful in his quick recovery from the transplant, and in turn, seeing Diego become stronger and stronger helped Agustin through his grieving. This extremely challenging and emotional transplant journey has created a powerful bond between the father and son that is incomparable to any other. “He is my superhero, and I tell him that every night,” said Agustin of his son. Diego has been through so many hardships at a very young age but continues to take things in stride and be very positive, and Agustin admires him so much.
As challenging and scary as the transplant process was, Agustin is incredibly grateful that they went through it and were able to give Diego another chance at life. Thanks to his transplant, Diego faces no physical limitations and can play sports and be active to his heart’s content. A significant milestone for Agustin was taking Diego skiing for the first time, as he had not known if this would ever be possible! While there are no physical challenges, the transplant process and the accompanying medical checkups and appointments have impacted Diego’s education. Agustin noted that Diego had fallen behind in his schooling and is now slowly but surely catching up. He shared his gratitude for COTS, as it was through COTS that Agustin was able to put Diego in the Kumon program to get him support in his learning.
Diego and Agustin have been connected with COTS since 2015, on the recommendation of a social worker at BC Children’s Hospital. They have been so appreciative of the sense of community they feel and the fantastic opportunities they have experienced through COTS. While no two families have the same stories, the support network is so strong despite these individual differences. Diego looks forward to going to summer camp every year and especially enjoyed being the Golf Ambassador for COTS and getting to share his story. Agustin noted that “normal” for a transplant parent and child is not entirely normal, as there are many things that they must adapt to and be careful of, but sharing in COTS activities helps bring some of that normalcy.
Agustin’s experiences with his son Diego have shaped his perspective and shown that we should never take anything for granted because you never know when something can change. This perspective was further brought to light when Diego was diagnosed with post-transplant lymphoma in 2017, 6 years after his transplant. It was devastating to learn that Diego was now battling cancer, as he had been perfectly healthy for six years, and this diagnosis usually comes within a year of having a transplant. However, Diego continues to be strong and positive. Agustin shared that he likes to take every day as it comes and appreciates the little things. He says thank you every time he leaves the hospital and is grateful that his son is healthy and active despite the transplant and lymphoma.
In addition to making sure not to take your child’s health for granted, Agustin had many other words of wisdom to share with parents. “Don’t go looking on the internet for answers, ask your doctor questions,” said Agustin, when recalling the urge to read all of the literature on transplants before Diego’s surgery. While there can be pressure to know what everything means, transplants vary case by case, and Agustin found that searching the internet added more stress to his plate. He encourages parents to ask every question they possibly have, not to hold back or feel bad for asking. Agustin also found that self-care was crucial in keeping him strong throughout the process. While parents may sometimes feel guilty taking time for themselves, Agustin likened self-care to putting on an oxygen mask on an airplane. “If you do not take care of yourself, how will you take care of your child?” he said. As the transplant process can be so emotional and challenging, it’s important to take time to care for yourself and recharge. Agustin found it helpful to read non-medical books to help distract his mind, took up boxing as a physical outlet of stress, and turned to family and friends for emotional support.
Much of Agustin and Diego’s transplant experience was spent with just the two of them to support each other, but today their family has grown. Agustin remarried, and Diego now has a younger sister. This transition was difficult at first, but it began to feel like their family was finally complete over time. Diego and his younger sister have an incredibly strong relationship – though they fight at times, they also love each other very fiercely. “She’s obsessed with her big brother,” Agustin said of his daughter. As a family, they try to embrace every moment together fully and appreciate that they have each other to lean on. Despite all of the hardships and challenges they have endured, they continue to be positive and focus on the small wins every day.