Nessa Gorham's Story
Nessa Jayne Gorham, a “miracle baby”, was born on May 5, 2005, after a complicated pregnancy and delivery. There were multiple close calls with her little life en utero, but in the first days after her birth, everything seemed to be returning to normal and her new parents, Nathan and Maegan, anxiously waited to take their precious bundle home. Reality shifted, however, when Nessa’s discharge exam revealed a suspicious heart murmur. Instead of being sent home, Nessa was sent to have an echocardiogram and an EKG. She was also scheduled for an appointment with a pediatric cardiologist early the following Monday.
Monday, May 9th, 2005 was one of the most difficult, overwhelming, and terrifying days for the Gorham family. The Gorhams learned Nessa had a congenital heart defect called Tetralogy of Fallot, consisting of four major structural abnormalities of the heart: a large hole between the ventricles, pulmonary stenosis (obstruction from the right ventricle to the lungs), an overriding aorta, and a thickened right ventricle. It was determined that Nessa would need open heart surgery by the age of six months, and possibly sooner if her condition became unstable.
Being new parents, the Maegan and Nathan were frustrated, scared, and confused. The doctors didn’t want to overwhelm them with the details of Nessa’s condition, and they had lots of questions the doctors weren’t able to answer. Nessa visited her doctor often during those first few weeks and had a visiting nurse come to her home three times a week, just to check on her condition. When Nessa was three weeks old, the family spent a long weekend at the University of Iowa Children’s Hospital to start her on propranolol, a medication used to slow her heart rate and indirectly, control retractions in her breathing.
After being started on the propranolol, Nessa’s condition appeared to have stabilized. Nessa’s surgery to repair her heart defect was scheduled for November 2005, and the Gorhams managed to enjoy life with their new baby for the next 5 months. Nessa was able to maintain normal blood oxygen levels during this period of time, which was very good. Maegan and Nathan were thrilled as Nessa was extraordinarily happy and very active, although quite small for her age. She had minor physical delays, such as rolling over and sitting up, but nothing too significant.
On October 19th, less than 2 weeks before her scheduled repair, Nessa began acting unusually lethargic. Her face held a bluish color, and she was not smiling, which was very unusual. Maegan contacted Nessa’s pediatric cardiologist who suggested Nessa be brought to the University for an examination. Upon arrival, the doctors determined she was having a “tet spell”, and her blood oxygen level had dropped to 68%, well below normal. Nessa stayed in the hospital for four days, before the team decided to move her surgery up to October 24th. In another white knuckle day for for the Gorhams, Nessa spent five hours in surgery, followed by three days in the PICU and another five days on the pediatric floor, with no major complications. Her surgeon was very happy with the repair, and Nessa made a quick recovery.
Today, Nessa is three years old and ornery! She’s doing great! Her only limitation is not being able to participate in competitive sports, a small and insignificant detail in the big picture. Her doctors estimate that she has less than a 25% chance of needing a second repair. She has a great sense of humor and an active imagination, with the vocabulary to match. She loves to spend time with her family and her dogs, and she never stops smiling!! You go, Nessa!