After a normal pregnancy and birth, Lauren Lawson’s baby boy went home seemingly healthy. But five weeks later, Lauren noticed Ben’s skin looked yellow and his stools had turned white. She took him to their pediatrician in Tulsa, and within an hour he was admitted to the local children’s hospital.
“He went through extensive testing and they suspected biliary atresia, but it couldn’t be confirmed until they actually saw inside him which happened when he was 8 weeks old,” Lauren said.
Biliary atresia is a rare disease of the liver and bile ducts that occurs in infants. When a baby has biliary atresia, bile flow from the liver to the gallbladder is blocked. This causes the bile to be trapped inside the liver, quickly causing damage and scarring of the liver cells, and finally liver failure.
Ben would need a liver transplant at some point, but he had to grow bigger and stronger. The hospital in Tulsa did not perform liver transplants, so Lauren and Michael traveled to Children’s Medical Center Dallas every month for treatment where Dr. Isabel Rojas, gastroenterologist, began seeing Ben immediately.
“Ben is a fighter, a strong, happy and sweet boy,” Dr. Rojas said.
Lauren says that Children’s immediately felt like home, and their first admission was eye-opening.
“Children’s has a whole floor dedicated to kids just like Ben with GI diseases,” Lauren said. “The nurses were incredibly knowledgeable and truly became my friends. All the staff – the doctors, nurses, lab technicians and custodians make Children’s an incredible atmosphere and why we decided to completely uproot our lives to be closer to the hospital. I was always sad when Ben had to be inpatient, but I was also excited to see everyone again.”
Michael would drive Lauren and Ben to Children’s, get them settled and then drive back to Tulsa for a week of work. Lauren says leaving Ben got harder for Michael every time so they gave it to God and listed their house on a Wednesday with the mindset that if it sold, they would move. The house was under contract two days later.
Ben needed a feeding tube and treatment for liver infections, hypertension, high ammonia levels and blood pressure issues. At 11 months old, he was placed on the transplant list. Ben was stable for the next 13 months before rapidly declining in January 2015. By the middle of February, he was in the Intensive Care Unit and had lost large amounts of blood causing him to be so weak that he couldn’t lift his head off the pillow. He also experienced muscle wasting and had zero fat on his bones. Lauren says during this time a simple gesture is something she will never forget.
“I was in the cafeteria getting lunch,” Lauren said. “I was six months pregnant and had been sleeping on a couch beside his hospital bed for weeks. I must have looked a little rough. A nurse noticed and as we went to pay, he bought my lunch. I ate my lunch through tears. It was exactly what my heart needed to make it through those days. That kind of exchange isn’t rare at Children’s and is what makes it our home away from home.”
Lauren says the support from Dr. Rojas also got them through the darkest of days.
“As Ben got sicker, she was always there,” Lauren said. “When he was moved to ICU, I called her crying and she was in that room within 10 minutes hugging and crying with me. I get teary eyed just thinking of everything she’s done for us.”
Ben was elevated to 1b status on the transplant list. Within three days, a perfect liver became available. Dr. Dev Desai, director of the Pediatric Transplant Program, performed the transplant which lasted 10 hours. “We could not close the surgical incision due to the size of the liver and severe swelling,” Dr. Desai said. “Ben went back to surgery two days later to close the incision.”
Lauren says Ben looked different immediately after the surgery. His yellow color disappeared, and a week later he ate for the first time. “Watching him eat was unbelievable,” Lauren said. “We were in awe as he mowed through bags of goldfish.”
Two and a half weeks after the transplant, Ben was discharged. He now sees the transplant team including Dr. Amal Aqul, Associate Medical Director of Hepatology and Liver Transplant.
“Ben is doing great and should be able to live a normal life,” Dr. Aqul said. “I tell all my recipient families that they received a precious gift and we want to always think of how the donors trusted us with it and make sure it survives and flourishes.”
Lauren says she could not be more thankful for Ben’s gift of life and thinks of her donor family all the time. She wrote them a letter with details about Ben’s journey including these excerpts:
“We were told Ben needed a liver immediately or he wasn’t going to survive. These days changed me. I became numb. I was starting to lose hope. Then, we received news of our saving grace. Our miracle. Your decision. A liver was offered to Ben and it was perfect. After transplant, his liver numbers were normal. About a week later, he ate for the first time in his life. What’s more is that he couldn’t get enough. And he laughed and smiled unlike anything I’d ever seen from him. As the weeks went by, his frailness was replaced with chubbiness and energy like a toddler is supposed to have. He has a light in his eyes that brings me to my knees. My thanks will never be enough. It will never heal the loss that you have in your heart, but I hope that knowing a piece of your child lives on in mine causes a small smile to erupt in you. Our family prays for your family every single day. We pray that your child watches over my son and giggles at his silly antics. We pray that each day the grief loosens its grip on your heart and is replaced with the joyful memories you have of your child and the knowledge that your decision to donate saved other children. You kept my family whole. In my momma’s heart of hearts we are connected. Thank you.”
As Ben recently celebrated his two-year transplant anniversary, the 4-year-old is on track developmentally and free of the feeding tube. He loves being a big brother to Sophia, who was born three months after his transplant.
“Ben loves patterns, learning to read and organization,” Lauren said. “He is an old soul. I love that about him. Recently, he has developed a sense of humor that is cute, too. He likes to change the lyrics of nursery rhymes to make them silly.”
Lauren has many hopes and dreams for her son.
“I hope Ben values the second chance he was given to have a healthy life,” Lauren said. “I hope he always feels comfortable being exactly who he is because he is perfect in every way to us. I hope he uses his story as a platform to inspire others to be organ donors. I hope he has a lifelong loving relationship with his little sister. I hope he finds the good in people and laughs daily.”
In 2014, the Lawsons and their loved ones started Benjamin’s Battle: The Foundation for Pediatric Liver Disease. The Foundation raises awareness by educating mothers of newborns about signs to look for that could indicate liver or gastrointestinal problems. The Foundation also provides financial, spiritual and community support to families affected by pediatric liver disease and transplantation. A Benjamin’s Box is provided to pediatric liver transplant patients and include toys, a survivor t-shirt, a coffee shop gift card, toiletries and meal cards.