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Bloomington, Indiana – June 3, 2013 -- June is a month full of family and fun … especially on the third weekend of the month when families gather to celebrate dads. Father’s Day has become a very special holiday for the Mastramico family of Pittsburgh, Pennsylvania. They experienced a miracle when Baby Rocco received a lobe of his daddy’s liver … and a second chance at life.

Following a premature delivery on the way home from their daughter’s Montessori school, Chris and Diane Mastramico welcomed Baby Rocco to their family on September 3, 2010. Chris and Diane and Big Sister Rena were so excited to welcome their new little boy to the family. They were blessed and happy.

But just a few months later during Rocco’s four-month-old well baby check, Chris and Diane were told something was wrong with his liver. When the test results came back positive for biliary atresia (a deadly liver disease), they were literally speechless. They were also told there was only one chance for survival … a liver transplant.

From that point, things moved very quickly for the Mastramico family. Rocco was placed on the liver transplant waiting list in early February 2011 and at nearly the same time, the family was introduced to the Children’s Organ Transplant Association (COTA).

According to Chris and Diane, “COTA provided us tremendous guidance and support. Not only did we receive support from family and friends, but also from our coworkers and employers, from organizations of all sizes and from our community at large. This was all because of COTA and our team of volunteers whose hard work and commitment gave us so much hope at a time when we were completely overwhelmed.”

While the work began to organize COTA fundraisers in honor of Rocco, his father, Chris, started the living donor evaluation process. After extensive testing, Chris was confirmed as a viable donor match for Rocco, and it was immediately decided he would be the donor. From that point on, there was no looking back. The daddy-to-son transplant was scheduled for May 12, 2011 -- just a few days after Rocco turned eight months old. The surgery took eight hours to remove the left lobe of Chris’ liver, and it took over 10 hours to transplant the lobe into Rocco in a transplant center across town.

According to Diane, “One of our miracles occurred in the operating room when the transplant surgeons discovered that Rocco’s dad (his donor) had an additional set of bile ducts on his liver’s left lobe. This made the liver lobe transplant to little Rocco even easier and likely more successful.”

Rocco spent the next the next three days in ICU and the following three weeks on the transplant recovery wing. Rocco was released on June 4th only 24 days after his procedure. Chris was released on May 19th, a week to the day after his procedure.

Like all transplant recipients, Rocco will be under the watchful eye of his transplant team throughout his childhood. He started his recovery with two scheduled clinic visits per week in order to monitor his liver function and to regulate his numerous medications. Due to his tremendous progress over the past year, Rocco is now down to one scheduled visit per month. Over time, Rocco will visit the hospital less frequently and take as few as two medications, but both check-ups and anti-rejection medications will be a normal part of his life throughout adulthood.

Today, Daddy and Rocco are doing very well. Their successful recoveries have been aided by the overwhelming support they have received from COTA, from family and friends, and from coworkers and community members. Rocco is growing up quickly and keeping everyone in the Mastramico household on their toes.

Truly the best Father’s Day gift!

The Children’s Organ Transplant Association is a national charity that provides fundraising assistance to transplant families. Since 1986, COTA’s priority is to assure that no child or young adult is denied a transplant or excluded from a transplant waiting list due to lack of funds. 100% of all funds raised in honor of transplant patients are used for transplant-related expenses.

For more information about the Children’s Organ Transplant Association, or to find a COTA family in your area, please email kim@cota.org.

Rocco Mastramico

Liver Transplant Recipient

Bloomington, Indiana – May 1, 2013 -- May is the month set aside to celebrate mothers. Mother’s Day is one of the most universally acknowledged holidays shared across cultures and traditions, and it holds even more significance for the Hendrix family of Blue Eye, Missouri. Six-year-old Cooper Hendrix is alive today because his mother, Gillian, donated a kidney to him. With this gift, she gave her son a second chance at life.

Now, almost two years after the mother-to-son transplant, Gillian shares these thoughts about the family’s transplant journey:
I remember the day we found out Cooper’s kidneys were damaged. I was actually still pregnant with Cooper and because he had an obstructed bladder in utero we had to have numerous ultrasounds. This particular day Tim, my husband who is a firefighter, was on shift and I had to go to alone. It had become pretty routine to go to ultrasounds, so I wasn’t concerned about going by myself. I remember the technicians measuring Cooper’s kidneys. I was told they were not equal in size and they had little black circles near them, which we later found out were cysts. Immediately after the ultrasound, I called Tim at work. I told him that there might be something wrong with Cooper’s kidneys. Over the next months of my pregnancy, his kidneys continued to be measured and we accepted the fact that our new baby would be born with kidney damage, but we had no idea to what extent.

When Cooper was born on April 17, 2007, he was six weeks early; therefore, making sure his lungs and heart were working were our major concerns. While those organs were fine, it was determined that both his kidneys together worked at about 1/3 the rate of one normal kidney. Over the next six weeks in the NICU, we learned about the different medications we would be giving the baby and how we would need to care for him. We were sent home with a number of medications to give the baby that would make up for what his kidneys were not doing. We were told Cooper would eventually need a kidney transplant, but the doctors did not know when.

Over the next four years, we had regular visits to Cooper’s nephrologists. His blood work would be up and down in regard to his kidney function, but it eventually started to steadily decline. In April 2011, while at a regular appointment with his nephrologist we got the news -- Cooper’s creatinine was at that ‘magical’ number. We were told the recommendation would be made to go ahead and start the transplant process. Our goal had always been to get Cooper to transplant without having to go on dialysis and we so far had gotten there. I had a mix of emotions that day. I was mostly scared, but also relieved that we were finally taking the next step to a better life for Cooper. We were told it could take months to go through the process of finding a donor, which meant more waiting, but at least it was closer to happening.

We wanted Cooper to have a living donor if possible so we chose not to put him on the transplant waiting list immediately. Tim and I always knew we both would be willing to be the donor and so the testing process began. We prayed it would be one of us. I am so thankful I have a husband who would do anything for our boys. It was determined Tim would go through the donor process first since insurance will only pay for one person at a time.

While starting the donor process, we learned of the Children’s Organ Transplant Association, or COTA. Thank the Lord! While our son’s health was/is the most important thing, the worry of how we are going to pay for everything was a huge burden hanging over us. We live about 250 miles from the hospital where his doctors are located so going to an appointment is not a quick trip … and we knew we would be taking a number of trips. Cooper’s pre-transplant care, his transplant and post-transplant care meant a lot of time off work, expenses with gas, lodging and food … not to mention mounting medical bills. Even before the transplant, Cooper’s medical bills had depleted us of our savings and had caused us to rack up a large credit card balance. We knew we were going to need financial help to make it through this life-saving journey. What a Godsend COTA has been. Our parents, family members and friends started working with COTA immediately once our paperwork was signed, and within a few short months, our campaign’s financial goal was reached. Talk about a burden lifted from our shoulders! Honestly, if we did not have COTA helping us every step of the way with transplant-related expenses, we would be up a river.

In June 2011, we learned that Tim was not a compatible donor and it was my turn to go through the process. I had so many emotions about it. Cooper has a little brother and I thought about being away from him during the surgery. I have always been with Cooper when he was taken back for surgeries, and this time I wouldn’t be able to. What if something happened to him and I couldn’t be there? What if something happened to me? What about Tim? How was he going to feel having his son in one hospital and his wife in another? What about the surgery itself? I had never had major surgery. And what if the kidney I donated failed? But I also thought … what if I was a match and didn’t donate? How could I not give my son a shot at a longer and healthier life? I had to do it. And the process began.

After two months of numerous trips to St. Louis for testing and weeks of waiting in between, I was given the go ahead. The surgery was scheduled for October 25, 2011. Again the emotions rolled. I wanted to get it behind us and get on with our normal life, whatever that was going to be. The day came for us to ‘move’ to St. Louis. Due to living so far away, we needed to be close to the doctors for a few weeks following transplant so they could keep a really close eye on Cooper. We temporarily moved into an apartment and settled in as best we could two days before the transplant.

Cooper had to be admitted to the hospital the day prior to surgery so I stayed with him the night before. I actually slept with him in his hospital bed. The next morning I had to be at my hospital at 5:30 am. I cried as I left Cooper. He was sleeping and I didn’t want to wake him, but it was just so hard to leave him. After I got settled at my hospital, Tim went to be with Cooper. It didn’t take too long before the pre-surgery stuff was done, and I was given something to relax. While I don’t remember much after that point, I do remember waking up and thinking, “It’s over!” Even though I didn’t feel great, I was so glad the actual surgery was over and now we could both heal. The surgery was on a Tuesday and I could not see Cooper until Wednesday night when I was wheeled over to his room. When I got there, he was sitting up in bed, eating macaroni and cheese and chatting with everyone. He was already back to being the happy little boy I loved.

Over the next six weeks, we had some ups and downs. A week’s stay in the hospital following transplant for Cooper, another week’s stay for him after getting a virus and Prograf toxicity, follow-up surgery to remove a stent, and a two-day stay for another surgery to replace the stent -- plus multiple follow-up appointments and lab work. We finally ‘moved’ home a little over six weeks after we had relocated to St. Louis.

It has been a roller coaster ride on so many levels since the transplant. We have made many, many trips to St. Louis. Cooper has had more hospital stays. Whatever comes our way, bad or good, the only thing we can do is keep going. While we may not always get the best news, I remind myself that getting upset will not change our situation. We just have to move forward and keep the best attitude we can.

If it weren’t for COTA and the people who donated their time and resources to help us along this journey, it would be that much harder to go through the lows. But Cooper is a fighter … he has been fighting to live since the day he was born. His fighting spirit and his infectious smile are the best Mother’s Day gifts I will ever receive.

Just saying ‘thank you’ will never be enough to show how blessed our family has been.

The Children’s Organ Transplant Association is a national charity that provides fundraising assistance to transplant families. Since 1986, COTA’s priority is to assure that no child or young adult is denied a transplant or excluded from a transplant waiting list due to lack of funds. 100% of all funds raised in honor of transplant patients are used for transplant-related expenses.

For more information about the Children’s Organ Transplant Association, or to find a COTA family in your area, please email kim@cota.org.

Cooper Hendrix
Kidney Transplant Recipient

Bloomington, Indiana – April 8, 2013 -- April is national Donate Life Month and April 10th is National Siblings Day. The Swanson Family of Arlington Heights, Illinois, will likely be celebrating both this month. Their lives have been forever changed because two different families chose to donate two livers to save both of their sons’ lives over the course of a year. 

On October 28, 2008, Jacob Williams and Lukas Arrant became the newest additions to Robyn and Scott Swanson’s family. Born at 35 ½ weeks, Jake at 5 lbs 12oz and Luke at 4 lbs 9 oz seemed the picture of health. During their first Christmas together, it appeared that Jake’s newborn jaundice was hanging on. Doctors ordered tests and a liver biopsy to see what was going on. They decided to do the same tests on Luke as a precaution. In early 2009, specialists at Children’s Memorial Hospital (now Lurie Children’s Hospital) in Chicago determined the twins had a disease called biliary atresia, but according to Robyn, they were hesitant to make the diagnosis because they had not known of a case of twins both having this disease.

Current research suggests that children may have a genetic tendency to develop biliary atresia and also suggests that a mild virus may trigger an autoimmune process in a baby with this tendency. As the baby’s body tries to destroy the virus, it also attacks and damages the liver’s bile ducts. The build-up of bile damages the liver resulting in cirrhosis. The damage cannot be reversed and the only cure is a liver transplant. For ‘Team Swanson’, this meant liver transplant times two.

Once the twins were diagnosed, the days of spring and summer 2009 were filled with numerous hospital visits receiving treatments, severe GI bleeds, medication adjustments and more. Finally, in September 2009 Jake was listed for transplant, and a few short weeks later, Luke was listed as well. Robyn and Scott Swanson struggled with this reality for their family.

It was during these stressful days that they discovered the Children’s Organ Transplant Association (COTA). The Swansons started working with COTA almost as soon as they found out such an organization existed. For Team Swanson, their transplant-related expenses were all being multiplied by two. Robyn says COTA gave their friends and family members a way to help. According to Robyn, one of the real stressors following the news that the boys both needed liver transplants was the financial part of the journey they were facing. Most families with sick children are burdened by the ongoing cost of deductibles, insurance co-pays, prescription costs, dietary supplements and travel to visits. With transplant patients, these are life-long costs.

“Throughout our ongoing transplant journey, COTA has been a source of hope during some very stressful times. COTA’s fundraising guidance and support has allowed us to live a more financially secure life, and hopefully will allow us to send Jake and Luke to college some day. Twins needing transplants is so much to juggle, and COTA has given us hope that we can get through this,” said Robyn.

With no compatible livers seemingly available, the family decided to have Scott tested in September 2010 as a possible living donor for one of the boys. Much to their dismay, it was determined that Scott was not a good living donor candidate. Their wait continued and the boys’ conditions continued to worsen. In May of 2011, Luke suffered a nearly fatal GI bleed. 

After an unusually peaceful summer, Team Swanson received the call on August 11, 2011, that the Children’s Memorial (Lurie Children’s) organ procurement team had a liver match for Jake. He received his new liver, and his second chance at life, that same day. Jake’s transplant and recovery were ‘text book’ success stories. He was home by September 1st and remarkably, he started preschool on November 3rd. Then, the next summer, Team Swanson got the call again … this time a liver was available for Luke. On June 28, 2012, Luke received his new liver and his second chance at life.

According to Robyn, “From the skill of our team of physicians, the pace of new medical knowledge and technology, to the overwhelming goodness we have found in humanity and specifically throughout our community, miracles simply seem to be around every corner.” 

The Swansons are forever grateful to the two families who gave Jake and Luke the ultimate gift -- the gift of life. 

The Children’s Organ Transplant Association is a national charity that provides fundraising assistance to transplant families. Since 1986, COTA’s priority is to assure that no child or young adult is denied a transplant or excluded from a transplant waiting list due to lack of funds. 100% of all funds raised in honor of transplant patients are used for transplant-related expenses. 

For more information about the Children’s Organ Transplant Association, or to find a COTA family in your area, please email kim@cota.org.

Luke and Jake Swanson