February 7-14 is Congenital Heart Defect Awareness Week, a time to raise awareness about the 1 in 110 babies born with a heart defect each year. Congenital heart defects (CHDs) are the most common birth defects in the united states, according to Mended Little Hearts, the nation’s largest CHD support organization. In recognition of CHD Awareness Week, we share a personal account from UAB School of Nursing Assistant Professor Penni Watts, PhD, RN, CHSE-A, whose son was born with a congenital heart defect.
Thomas is my miracle. He was born March 14, 1997, the middle of my three children, only son, and with a congenital heart defect. He had transposition of the great vessels where his pulmonary artery and aorta positions were swapped. He was brought to Birmingham from Montgomery by ambulance. When he was five-days-old Thomas was flown to Boston for life-saving heart surgery. We could not go with him on the plane but as a nurse, I knew he needed to be in Boston as soon as possible. We put our baby on UAB’s Critical Care Transport and took a commercial flight.
Thomas’ surgery was a success and a week later we all flew home together. And he has thrived, playing baseball and football, though basketball and its necessary endurance is a challenge. He is now a junior finance major at Jacksonville State University.
Twenty-one years later Thomas faced another battle for his life.
In October 2017 he was diagnosed with mono but seemed to recover. In November he was on a disaster relief trip in Texas when he began to feel bad again, having night sweats and sleeping for hours in the backseat of a car where his team was working. As a nurse I recognized the symptoms he described but I didn’t tell anyone my suspicion, including Thomas or my husband Eric.
I pushed to get into see his physician and just before Thanksgiving we got the call his that the CT and ultrasound of his extremely large lymph nodes were suspicious so Thomas went for an excisional biopsy. December 8 we received the preliminary report—Thomas had Hodgkin’s Lymphoma.
December 13 the final confirmation came—Stage 3 Classical Hodgkin’s Lymphoma with spots mainly in his neck but some in liver, chest and underarm lymph node areas. His treatment plan was laid out—twice a month chemo for six months and scans after two months, with the possibility of radiation depending upon how he responded. His physician felt like Thomas had a good prognosis. Since the chemo can affect Thomas’ heart they would watch him closely.
While all of this was going on we got his grades—all A’s fall semester even though when he took his finals he didn’t feel well. Thomas is a fighter.
He began treatment January 3 at The Kirklin Clinic of UAB Hospital at UAB Medicine and his physician said he could go back to school at Jacksonville State where he will graduate in May 2019.
While this mama bear is a little protective, I remembered what I learned early on with his congenital heart defect—the best medicine was for Thomas to get back to his normal and into a normal routine—going to class, spending time with friends, being a college student.
The day his dad and I took him back to school in early January we spent an hour or more scrubbing his apartment and I can’t believe there were any germs left. As a nurse, I was most worried about the flu season and the impact treatment would have on Thomas’ immune system. He consistently wears a mask when he is out and so far, has avoided the flu or other illness.
Thomas has a wonderful sweet positive attitude and a strong faith for a 21-year-old. And Thomas has an army of family and friends behind him. He also started a blog chronicling his journey and sharing his faith with others, thomascwatts.blogspot.com.
In late February 2018 Thomas was declared cancer free—his pet scan came back clear. He is continuing chemo as scheduled through June. And, instead of four meds each visit, he will have only three meds.
Thomas is strong. He finished his sixth chemo treatment on his 21st birthday.
While this is most often a treatable disease, we do not know what’s ahead. We are so fortunate and blessed. There are so many others suffering with worse outcomes, difficult treatment plans, and no hope. Nurses see and care for these patients every day.
Our experiences have been difficult, but many, many others are suffering much worse situations. We’ve learned to count our blessings and remain ever thankful to UAB for being by our side every step of the way.