Lawson Riley was born in April 2016 at 26 weeks and 5 days gestation, weighing 1lb. 11oz. and measuring only 13 inches in length. Lawson proved his strength from the beginning and fought to gain weight and overcome many obstacles.
In June, Lawson was diagnosed with Necrotizing enterocolitis (NEC) and transferred to Riley Children’s Hospital, most commonly known as Riley (not to be confused with the family’s last name.) NEC is a serious disease that occurs when the intestinal tissue becomes damaged and begins to die. It most often affects premature infants. Surgeons had to remove 99% of his intestines, so a central line and G-tube were placed for him to receive and excrete nutrients, fluids and medications. The road ahead seemed very long.
By mid July, Lawson had progressed enough to wear clothing, be moved to an open crib, experience laying in a swing, and even be weaned off of his oxygen support. By the end of the month, he weighed 5lb. 7oz., but signs of infection put him back on oxygen and medications.
In August, his parents were trained in G-tube care, emergency G-tube replacement, and how to change his central line dressing. His liver started showing signs of damage from the TPN lipid nutrients, so alternatives were discussed, but he was progressing in the right direction.
On September 9, an 8 pound Lawson had passed enough tests that he was finally ready to leave the hospital. After four and a half months of hospital rooms, monitors, nurses and everything else that comes with a NICU experience, his parents finally had their little boy at home. Medications, oxygen tanks, weekly blood draws/labs, and a nurse/therapy schedule were attached, but they were home. Due to the possibility of infection, Lawson wasn’t able to attend public events or be in large crowds, meaning that simple outings such as eating out or shopping for groceries became a scheduled task for his parents.
For several months, he continued to grow and progress and had a few trips back to Riley to fix complications to his central line. On December 22nd, a fever sent Lawson to the emergency room and a fear of infection admitted him back to Riley Children’s Hospital. Soon after, Lawson tested positive for RSV type B and pneumonia which kept him and his parents in the hospital until Christmas Day. Around this time, iron transfusions were started to help with his hemoglobin count.
Evaluations for transplant started in January 2017 and February brought a diagnosis of paraflu, ebola virus, and thrombocytopenia that put the family back in the hospital. The Riley family received a call on March 15 that Lawson had officially been listed on the transplant list with a 1A priority listing to transplant his stomach, pancreas, small intestines, liver, and colon. Shortly after listing, Lawson had to have his central line replaced again, and continued the frequent lab work and testing to monitor his levels.
At the end of March, at 11 months old, his bilirubin count and lab results indicated that he needed to up his iron transfusions and could possibly be impacted even after the transplant.
As Lawson approached his first birthday, he developed a central line infection that left him spending several days, including his first Easter, in Riley.
On April 29, 2017, a smiling Lawson celebrated his first birthday with his family. While waiting for the transplant, Lawson still receives weekly iron transfusions and blood draws/labs and is dealing with effects of thrombocytopenia which causes bleeding into the tissues, bruising, and slow blood clotting after injury.