August 1, 2018 — Each year, August 1st – 7th is recognized as National Minority Donor Awareness Week, which is a period of time one Texas transplant family will be celebrating with joy and gratitude this year. If a suitable liver donor had not become available, it is possible their first born, Damian, would not be alive and running around the house grinning from ear to ear as he is today.
The Maldonado family’s transplant journey began two days after Damien was born in May 2015. The beautiful first baby born to Cindia and Roland quickly became quite jaundiced and even with medication the jaundice did not get better. Several months later when Cindia and Roland were told their baby was born with a deadly liver disease their world turned upside down. As a way to look back and see how far Damian has come, Cindia put their family’s transplant story to date in writing and some of her excerpts are shared here.
Mr. Damian has been so full of surprises since the day he was born with the very first surprise he gave us being his unexpected and early arrival at 36 weeks. And to top it off his early arrival happened on the day of my baby shower!
At only 24 hours after being born Mr. Damian started to become very jaundiced so the hospital wanted to keep him an extra day for observation. After that observation time we got to bring him home, but we were given a medication he needed to take to help bring down his bilirubin number. It was higher than normal but the doctors told us it was nothing to be concerned about. We had to get his bilirubin checked every two weeks until it was normal. Time passed and we did everything we were told but his jaundice never got better. Our pediatrician decided to run some tests and we were sent to a GI doctor in Lubbock (Texas). Mr. Damian turned three months and he had his first liver biopsy.
After a very stressful 24 hours of waiting, we received the news that he had biliary atresia, which meant the bile could not flow from the liver to the gallbladder. This causes the bile to be trapped inside the liver, quickly causing damage and scarring of the liver cells and eventually liver failure. Getting that news was devastating; it was one of the worst days of our lives. At only three months old he had his first surgery, the Kasai procedure, which is an operation to re-establish bile flow from the liver into the intestine. With this surgery there was a possibility he could go without needing a transplant for many, many, many years. After only a month we were back in the hospital fearing something went wrong with the surgery but this time it was only a small infection. We remained very hopeful Mr. Damian would be one of the lucky ones who could go years without a liver transplant.
But that was not to be the case. In October 2015 we were sent to the Children’s Hospital Colorado in Aurora (seven hours away from our home in Texas) to see a liver specialist. Mr. Damian was only six months old and he was so small for his age that the first thing we were told to do was to fortify my breast milk to help him get stronger and bigger before they could even add him to the transplant waiting list. We were sent home to Texas knowing we would have to return to Colorado for regular checkups. It was during this visit to Colorado that a transplant social worker gave us some information about the Children’s Organ Transplant Association. I called COTA and instantly felt better. We had not really thought about how much all of this was going to cost – not just the liver transplant itself but all of the travel back and forth and lodging for us in Colorado and loss of job income during his transplant and so many doctors’ appointments and medications. Once we started to think about all of the expenses we would be facing for the rest of Mr. Damian’s life, we knew we were going to need help.
The Children’s Organ Transplant Association (COTA) uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of trained volunteers. On October 9, 2015, Cindia and Roland officially became part of the COTA family and a COTA fundraising specialist travelled to their Texas hometown to train the volunteers for the COTA campaign in honor of Damian M. COTA is a 501(c)3 charity so all contributions to COTA are tax deductible to the fullest extent of the law, and COTA funds are available for a patient’s lifetime. This group of committed friends and family members, i.e. COTA Miracle Makers, quickly got to work organizing fundraisers to help with transplant-related expenses.
We had a lot of scares while caring for Mr. Damian back home in Texas, but one night we ended up in our local ER because he was not keeping any of his formula down. We were inpatient for several days in Texas and his vomiting was not getting better. His liver team in Colorado wanted us back there ASAP so that was the first time me and Mr. Damian flew on an airplane. Everyone was trying to figure out what was wrong and this meant we had to spend our first Thanksgiving as a family in the Colorado hospital. Mr. Damian was just getting sicker and sicker and on December 16, 2016, there was no choice but to put our precious baby on the transplant list.
As things got worse we saw how much this was taking a toll on Damian and on us. We finally got the call we and so many others had been praying for on April 23, 2016. What a long day! There was a big COTA in honor of Damian M fundraising event going on in Texas and we had spent all day at the kickball tournament fundraiser. After spending all day outside, Mr. Damian and I went home to do meds, take a bath and go to bed. My phone rang at 8:08 pm – it was the on-call transplant coordinator. My heart just exploded when she told me they had a liver. I couldn’t believe it. She told me to pack all of his meds, TPN pumps and all of our things and get in the car to head out to Colorado as soon as possible. She told me to drive safely because we had a seven hour drive ahead of us. I called my husband because he was still at the COTA fundraiser and gave him the wonderful news. He shouted it to everyone there and they were so happy for us! As soon as my husband got home we just started throwing everything in our luggage, loaded up, said goodbye to our parents and headed out. We stopped only to fill up on gas and get me some coffee. At 11:45 pm we hit the road. I was pretty nervous, but the whole drive both Mr. Damian and my husband were asleep so it was just me wrestling with my thoughts and fears while staring at the long road ahead of us. We got to the hospital around 5 am Sunday morning and the team got to work right away.
The transplant was scheduled for the morning of April 25th. We were told it would take between eight and 12 hours and let me tell you it seemed like much more, but we finally got the call that it was done. One of the surgeons came out said everything went very well. The new liver was a perfect match but they did have to cut it to make it fit but it fit perfectly. When we finally got to see our baby it was a roller coaster ride of feelings. We were scared … happy … sad … excited, but most of all grateful.
He spent about two weeks in the PICU and then one week on a pediatric floor. Finally after almost three weeks in the hospital we got to leave. We had to stay local for a few more weeks just to keep an eye out on his liver levels so we checked into the Ronald McDonald House. At first we were getting labs checked three times week, then two times and at the end we were down to once a week. After almost two months, Mr. Damian had his last surgical device removed and we got to go home!!!
Being back home was the best feeling ever. Mr. Damian was a completely different little guy and we loved it. It was like having a whole new baby. We have definitely had some bumps in the road since Mr. Damian’s transplant, but he has been able to overcome every one of them so far. Since his transplant, Mr. Damian has had four liver biopsies and two episodes of rejection but thankfully he has always pulled through. We try to live as normal a life as we can, but we know our daily routines are very different from the average family with a three year old.
The COTA in honor of Damian M team of volunteers worked tirelessly organizing many fundraisers in Dumas, Texas. The team was able to raise nearly $50,000 to be used for transplant-related expenses, which has truly been a gift for this young Texas family. Damian will need to take expensive prescription medications for the rest of his lifetime to help ensure he does not reject his new liver. And there will be numerous long car trips back and forth to Colorado for this family. Cindia and Roland will gladly and thankfully make them all.
According to these COTA parents, “The Children’s Organ Transplant Association (COTA) gave us hope at a time when it seemed like our hope was lost. Our little baby boy was so sick and we were struggling with lots of doctors’ appointments and tests and medications … and so many bills. Once we heard about COTA we felt a sense of relief. COTA sent someone to our little town in Texas to train our volunteers about fundraising for transplant-related expenses. COTA has made our entire transplant journey less stressful by taking away the fear of how in the world we were ever going to pay for all of the bills and has allowed us to start thinking about our family’s post-transplant future.”
Today, Damian is a happy and energetic boy who loves horses and Paw Patrol. He keeps his mom and dad on their toes chasing after him and keeping this rambunctious toddler safe. They are incredibly thankful to their donor family who has given their entire family the gift of life.
August 1st – 7th is National Minority Donor Awareness Week, which is a week that was created to increase awareness of the need for more organ and tissue donors, especially among minority communities. Minorities make up more than half (58%) of those currently listed on U.S. organ transplant waiting lists. Many COTA families are waiting for the life-saving call the Maldonado’s received. Please go to www.RegisterMe.org and register to be an organ donor in your state. Every day 22 people die waiting for an organ transplant here in the United States. One organ donor can save eight lives.