After a Rare Heart Disease Appears at Birth
At my routine 20 week pregnancy ultrasound, a heart abnormality was identified. Soon after, via a fetal echocardiogram, Pediatric Cardiology diagnosed my soon-to-be-born son, Liam, with Truncus Arteriosus – a rare type of heart disease that occurs at birth, in which a single blood vessel (truncus arteriosus) comes out of the right and left ventricles, instead of the normal two vessels (pulmonary artery and aorta).
Liam was closely monitored prior to, and during delivery. In order to assess my son and to transport him to the NICU prior to surgery, the NICU team was also present at his birth.
The nurses and medical staff who cared for Liam were compassionate and attentive to all his needs, as well as to the needs of our family. After surgery, at five days old, Liam was transferred to the Pediatric Cardiac ICU for recovery. A pediatric cardiologist and nurse specialist were there for every morning round. I always felt secure that he was receiving the best quality care possible. His providers were so incredibly thoughtful and sensitive to my son's needs and our concerns. They were patient and answered all of our many questions. I was amazed at their willingness to take so much time with our family. I felt my son was more than just a patient; I felt that he was someone who mattered so much to them. After three weeks in the hospital, and recovering with feeding problems and oxygen issues, he came home on supplemental oxygen and an NG tube.
Training for Liam’s Care
As a new mom, I was very nervous about the special care that my newborn needed at home. The nurses and medical staff, however, spent a significant amount of time training and educating our family to be equipped and comfortable with managing his care at home. Specifically, Barb and Mary provided familial support during our son’s surgeries and ongoing updates regarding his status. They both also played critical roles in monitoring Liam’s inpatient and outpatient condition to ensure his needs were being addressed. Dr. Raff met with us and took a great deal of time, answering questions about Liam's complex surgery as well as addressing anticipated future surgeries. Because knowledge soothes me, I was comforted with the amount of education and knowledge they all provided.
Thoughtfulness and Compassion at Children’s Hospital
I am so utterly thankful for the medical staff at UC Davis Children's Hospital. I could not imagine Liam being born at another hospital. He is a complex kiddo with a number of medical challenges, including congenital heart disease, 22q deletion, hypocalcemia, GERD, cell-mediated immune deficiency, hydronephrosis, etc. Everyone was very thorough in managing his care and identifying other medical complications that needed to be addressed along the way. Today my son is thriving and I attribute so much of that to UC Davis Children's Hospital physicians, medical staff, and nurses. And for that, I am forever thankful!
— by Liam’s mom, Julie Hight