In memory of Gavin
Alpha-1 liver disease cost Gavin his life; his mother hopes awareness can save others.
In just 11 months of life, Gavin was hospitalized seven times. He went through three surgeries and had five different scars on his small body. He went on the transplant list for a new liver, and faced complications that prevented him from undergoing the surgery three times.
All of which may have been prevented, if his pediatrician knew about Alpha-1.
In October of 2007, Bethany and Andre Sprague celebrated the birth of their third child, Gavin. The family was excited.
The first night home from the hospital, everyone lay together in bed and embraced the moment.
“You could have made a Hallmark commercial about it,” Bethany said in her blog. “We had no idea then that there was something wrong.”
Gavin weighed five pounds, five ounces when he was born, smaller than either of his siblings, both of whom were born several weeks premature. He was also slightly jaundiced, but this is very common in newborns. And when the pediatrician said not to worry about it at Gavin’s newborn checkup, the Sprague family took him at his word.
They went on enjoying their new baby, and not worrying.
At his one-month checkup, Gavin had only gained one pound. The pediatrician told Bethany that Gavin had a form of jaundice called, “breastfeeding jaundice,” a harmless condition that appears five to seven days after birth and can last for up to two months. The pediatrician told Bethany that supplementing his diet with formula would “kick-start his liver into action.”
But formula supplements didn’t seem to make any difference.
“Some of our relatives started commenting on Gavin’s size and coloring, which planted little seeds of worry in the back of our minds,” Bethany said.
Gavin’s two-month checkup didn’t provide any reassurance. Gavin had only gained one more pound since his first-month visit, and his jaundice was getting noticeably worse.
The pediatrician still said the jaundice was caused by breastfeeding. He insisted that if Gavin were given more formula, the jaundice would clear up. Bethany was determined to figure out what was wrong with her little boy.
“I started searching the internet for articles on breastfeeding, weight gain, jaundice, etc,” she said. “I called a lactation consultant. I spoke to a nurse through our insurance medical hotline. But I couldn’t find any concrete explanations.”
After Christmas, Bethany and Andre began to really worry.
Gavin’s eyes were dark yellow, his skin was severely jaundice and his body was gradually getting thinner. Bethany and Andre returned to the pediatrician’s office. The pediatrician told Bethany and Andre that Gavin’s weight gain had increased. This month, Gavin weighed an extra one and a half pounds.
“He said he was pleased with his progress. Well, we weren’t,” Bethany said.
She brought up his size and color and demanded that the pediatrician run some tests to figure out what was wrong. The pediatrician assured them that if Gavin were having liver problems, then they would be seeing “other symptoms, like white stools.”
Bethany turned and looked at Andre.
They had noticed that Gavin had white stools; they thought it was probably because they kept switching from breastfeeding to formula. The pediatrician ran the tests, and the results showed that Gavin had serious problems with his liver.
The Sprague family: Bethany with Gavin, Evienne at top center, Joenick at bottom, and Andre.
Gavin was rushed to the hospital, where doctors, specialists and nurses did blood work and ran tests to find the source of the liver damage. Gavin had surgery to rule out Biliary Atresia, a condition where parts of the bile duct system are missing.
The doctor took a liver biopsy to figure out what was causing his liver problems. The test results finally revealed that Gavin had Alpha-1.
He was placed on the transplant list in April, when he was just six months old. The Sprague family pulled together to raise as much money as possible for Gavin’s transplant. They held ice cream socials, movie nights, bake sales, silent auctions, car washes, golf tournaments and a yard sale. Their community came together to help in every way that they could, donating their personal items for the yard sale, attending each fundraiser and offering support through their personal businesses.
“It’s amazing to me to think that it all came about because of my little man,” Bethany said.
With the help of the community, Bethany and Andre had enough money to get them through the first month of Gavin’s surgery. With their financial concerns slightly at bay, they began to focus on the emotional and physical concerns.
Dr. McDiarmid, head of the transplant program at UCLA explained to them that liver transplants are very complicated. Because everyone’s liver has a slightly different shape, it’s hard to find one that matches. Also, the ducts and veins that flow throughout the liver are very small. The biggest problem, she explained was not rejection, but the possibility of those ducts getting clogged and swelling up, which brings on the possibility of another transplant within the first week.
With all the dry runs, the transplant preparations, the reading, explaining and follow-ups, nothing could prepare them for what would really happen.
During his last visit to the hospital, Gavin developed a fungal infection that spread rapidly throughout his body. It could not be controlled and Gavin passed away on Sept. 22, 2008, just two weeks before his first birthday.
Bethany is determined to keep spreading the word about Alpha-1 and the importance of organ transplantation. She plans to run annual toy drives for the hospital on Gavin’s birthday and continue to fundraise for Alpha-1 research.
“I don’t want anyone else to ever lose a child to this,” Bethany said. “It is like losing Gavin all over again.”
Information from this article has been taken from Bethany’s blog.
Read Bethany’s Blog: Gift for Gavin
