Mother of heart transplant recipient

Why did Travis need a transplant?
"He was born with a congenital heart defect that was not repairable with any type of surgery. Travis had an atrioventricular septal defect with a hypoplastic left ventricle, which in very simple terms means that he had a large hole in his heart and that his left ventricle was too small to do the job it was meant to. His defect was not diagnosed until he was two months old. He was then transplanted at five months."
Did you know about transplantation before your son needed a transplant?
"Only that kidney transplants had been done, that was how I first realized that the doctors might want to do a transplant for Travis. I remembered having seen collection jars in convenience stores where families were trying to raise money for their children's kidney transplants. I had never really heard of anyone having done a heart transplant, but somehow I just knew at that moment we were headed down that road." 
Has Travis ever been sick again?
"Nothing out of the ordinary realm of childhood illnesses. He was hospitalized one year after his transplant for a routine heart catheterization and that is the last time he has been in the hospital. When he was younger he did get a few more colds and bugs because of his immunosuppressed state, but now he has developed many immunities and is a very healthy child."
What would you say was the hardest thing for your family in regards to the transplant process?
"Waiting, wondering if we would get the right heart in time. And not knowing what his quality of life would be post transplant, it was very hard to find other families to share their experiences."
Travis was just a baby when he received his transplant. How and when did you talk to him about his new heart?
"We've always talked about his 'new' heart. He has a heart party every year on the anniversary of his transplant, to celebrate the amazing gift our family received. As he has gotten older, we answer questions as they come. For Travis it is all just part of who he is, without much of the wonder that outsiders hold."
How has your sons transplant changed the way you view organ donation?
"My husband and I were always supporters of organ donation. This experience only made us more vocal about educating others on the need!"
What advice would you give other parents who have a child in need of a transplant?
"Be strong, never give up hope, and lean on those around you for support. This is a journey that requires great endurance and the love and support of all those involved."

Ashley
Two Transplants By Age 14 (Story written by Karen Littleton)
            If Transplants for Children was a painting, it would not be an abstract or a landscape. It would be like a Norman Rockwell portrait: a family gathered together at a table, celebrating the simple blessings that come from being a family.
            When a child experiences a life threatening health crisis, even the strongest families have to seek external resources to help them through their darkest days.
            Ashley and her parents Grace and Felix turned to Transplants for Children when their infant’s health was failing, and they’re grateful they did.
            In July of 1993, Ashley was born full term without complications, although doctors were puzzled that she weighed only three pounds. Out of caution, they kept Ashley in the hospital, hoping she would gain weight.
            During that extended stay, her doctors noticed she was retaining fluids and her body would appear swollen in different areas. High fevers soon began to accompany those symptoms. Tests were ordered.
            At age one-month, Ashley was found to have Congenital Nephrotic Syndrome (CNS), a group of symptoms that include a massive loss of protein in the urine that causes edema and high cholesterol levels in the blood. The defect starts in the kidney filters, which allow protein to leak into the urine, starting the cycle of disease.
            CNS can be caused by in utero infection or genetic disease, but regardless of the cause, the course of the disease is severe. Generally within four years a child with CNS develops renal failure that rapidly degrades to end-stage renal disease. Kidney dialysis or a transplant are the only options for survival.
            Ashley lived in an intensive care incubator for her first 5 months, and then one day her doctor shrugged and told the family there was nothing more he could do. He said they should just take her home and love her until she passed away.
            Grace and Felix refused to accept the doctor’s grim surrender. They immediately sought a second opinion. The new doctor who’d been recommended by a relative made his diagnosis: Ashley’s kidneys had to be removed in a procedure called a nephrectomy.
            The family immediately contacted Transplants for Children. They needed fast and accurate guidance and resources, and TFC sprung into action to assist them in as many ways as possible.
            “We were in over our heads and we needed to move quickly,” Grace said. “Transplants for Children helped us learn what we needed to know and mobilize our efforts to save our baby.”
            The family struggled to accommodate the life crisis they were handed. Both parents had to work full-time because income and health insurance were vital. They arranged alternate work schedules so Ashley could receive their round-the-clock care.
            Ashley had to weigh at least 10 pounds to be eligible for transplant, so Grace and Felix learned how to feed her through a tube, in addition to learning how to administer peritoneal dialysis.
            Family members stepped in to help care for their two sons Andrew and Joshua. The boys knew their baby sister was in a life or death struggle, so they adapted.
            Finally, on December 8, 1994, little Ashley got her second chance at life when her mother’s left kidney was successfully transplanted into her tiny body. She was the youngest child in University Hospital’s history to receive an organ transplant.
            “Ashley made history that day, and Transplants for Children was an important part of that historical event,” Grace said.
            With the successful transplant, the family had to embark on a new routine. Their cherished little girl still needed to have her medications administered and regulated, plus she needed to be shielded from large crowds or situations where she could be exposed to contagious illnesses.
            Though Ashley’s kidney transplant was a huge success, she entered school small in stature and a bit delayed in developmental milestones due to the massive health issues and intake of medication that defined her babyhood.
            For the next 13 years, Ashley consumed all the foods and beverages she wanted because it was important for her to sustain her strength and growth. Her parents maintained a rigorous schedule for her medical check-ups and followed her doctor’s orders to the letter.
            During a routine check-up in the summer of 2006, doctors informed the family that Ashley’s glucose levels were extremely elevated. They needed to take her to an endocrinologist immediately. She had likely contracted diabetes. Her doctor said the medication Prednisone may have triggered the disease.
            Grace and Felix became frustrated when the first available endocrinology appointment was six long months away. By the time Ashley saw the specialist; her glucose levels were so high the doctor said he was shocked she wasn’t comatose.
            The family took a crash course in regulating diabetes. They watched Ashley experience diabetic symptoms like fatigue, thirst and frequent urination. Little did they know that those symptoms also were common to the body rejecting a kidney transplant.
            Within three months, they learned that her transplanted kidney was failing. Their renal failure nightmares began anew, but this time they knew immediately to contact Transplants for Children.
            “Transplants for Children helped us navigate the process before, so we knew we could contact them again for the latest information and assistance we’d need to get through this crisis,” Grace said.
            Because of scarring caused by her earlier renal disease, Ashley was no longer eligible to receive peritoneal dialysis at home. She had to go to a clinic three times a week for dialysis.
            This time, doctors told them that Ashley’s health had to be stabilized before she could be placed on the transplant waiting list. They stressed that she had to be 100 percent compliant with their orders, including adhering to a highly restricted diet than any teenager would find nearly impossible to handle.
            Her big brothers were extremely helpful in terms of the family’s efforts to keep Ashley on course. Andrew and Joshua drove her to her medical appointments and took care of countless other details so their parents wouldn’t have to miss work.
            After six months of rigorous compliance, Ashley was finally placed on a transplant waiting list.
            On May 2, 2008, Ashley’s physician informed the family that Ashley had developed a blood clot in her passageway called a fistula,  The clot had to be surgically removed immediately, because Ashley had to continue with dialysis or she would die.
            “With daily prayers and the emotional support we got from Transplants for Children, we were able to survive the fear and dread for a full year while we waited for Ashley’s transplant,” Grace said. “Finally, our prayers were answered.”
            On May 3, 2008, Ashley received her new kidney. The donor was a 20-year-old male who did not survive a trauma. His other kidney, along with his heart, pancreas and liver were donated to others who would not have survived without them.
            Ashley has just finished the 7th grade. She still has many medical appointments, so she needs frequent help keeping up with her schoolwork. But she’s happy, and her health is stable enough for her to lead a relatively normal life.
            Her mom said, “Transplants for Children has helped us with information, resources and even financial support when we needed it most. The parental support group helped get us through our darkest hours, helping our marriage and family survive.”
            She said her family will always be a part of TFC’s extended family. “If they need our help with any of their events or programs, they can count on us. They were there when we needed them, and we’ll be there when they need us.”