Lucas, born 2005Lucas was diagnosed with HLHS seven days after he was born, at the Children’s Heart Center in Rochester, NY. We traveled the distance to the center for an echocardiogram ordered by our family doctor when he heard a loud heart murmur. Etched in our minds are certain moments: the fear I felt in the car that he may have a hole in his heart that would require surgery; the stunned life-changing words “Lucas has some issues that are going to need to be dealt with – he has HLHS – let’s finish the discussion in intensive care;” the realization of the complexity of HLHS. He had the Norwood surgery four days later, after they had a chance to plan the surgery that had to be uniquely suited to his heart. During this time I absorbed the medical information from the doctors, I continued to nurture my son the best I could in the hospital, and I visited Little Hearts, Inc “Stories of Hope”, to fortify my hope that my son could be one of the lucky ones.
Due to the length of time that had gone by without intervention after birth, he did have decline in heart function before the surgery, and that was really scary. Miraculously he bounced back. He had to have his chest left open for five days after surgery and a nerve for his diaphragm was stunned during surgery, causing some worry and almost leading to further surgery. The nerve recovered over time. He needed an advocate in the capable but busy hospital, and we had two young daughters at home an hour and a half away. I stayed with him all but one day when I went home to see my girls, who’d had their mother and baby brother whisked away out of the blue. My husband Tim went back and forth taking care of our girls and us. I pumped breast milk and determinedly convinced the medical staff that I could breast feed this special heart baby with success. After 2-1/2 weeks in the hospital, we went home.
I stayed home with Lucas and our girls, Vianna and Donata, for the next 3 months between that surgery and the Glenn. His stats were all over the place and he was medically fragile – a cold could have been too much for him to bear. It was summertime, and we kept him healthy and away from the public. At 4-1/2 months he had the Glenn with no complications and only six days in the hospital. I did breastfeed him successfully for the entire first year of his life, although it was a labor of love. Since he was both healing from surgeries and growing, I nursed him every 1-1/2 hours around the clock for that entire year. He stayed at the 50th percentile for height and weight, and our doctor called him a “tank.” It was agreed that the breastfeeding was successful, and I know it meant a lot of comfort to both of us as well as providing important immunity for him. I went back to work and placed him in a large but nurturing daycare when he was 1-1/2 years old. He went through regular colds and flues just as well as our heart-healthy daughters did.
After over three years of “life without hospitals”, at age four he had his Fontan surgery. The year before his surgery he really slowed down – he didn’t have much endurance and didn’t run around, but he steadily moved along through his day and was content. It happened so gradually that he didn’t know life any other way, but he did wish he could sometimes be first in line and play like the other kids. He was in the hospital ten days, again with no complications. After that surgery we all celebrated the way he could run around and enjoy more energy. He had some temperamental times for a while following that surgery, but with lots of love and patience normalcy has finally reached our lives.
Lucas is in school, he loves math and practices adding and multiplying, and is a very happy, active and teasing little boy. People who don’t know about his condition are astounded that he has HLHS and has been through all of these surgeries. Our family is closer than ever and it has been well worth all of the trials. What a gift to live each day with all of our precious children.
Story by Lucas' mom, Kathryn - New York
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Asa, born 2008