Leif's first surgery for Hypoplastic Left Heart Syndrome (HLHS) was his Stage I Norwood. The surgery was performed at the University of Iowa Hospitals and Clinics (UIHC) on August 19, 1998 when Leif was 8 days old. The surgery connects the aorta and pulmonary artery, which allows the right side of the heart to continue pumping blood. The surgery is considered palliative (temporary), allowing the heart time to grow before doing Stage II. Pre-aortic arch, Leif's aorta had failed to develop, so this also had to be corrected in his first surgery. For more complete information on the Norwood procedure, click here
For a diagram of Leif's heart at birth, click here.
For a diagram of a normal heart, click here.
Leif's surgery was long, with several complications, but the end effect was great. After surgery he was in pediatric intensive care (PICU). At first, he had a doctor and a minimum of two nurses at his side at all times. He had three catheters (on his penis, side, and groin). He had three chest tubes to drain blood. He had an IV on his foot that had seven medications attached. He had another IV on his hand. A ventilhator breathed for him. Drugs kept him paralyzed. His chest incision was not closed after surgery, to allow for the swelling to go down and in case of emergency to allow the surgeons to easily go back in. On August 22, 3 days post-Norwood, the surgeons did go back in when Leif was not saturating well. The shunt was cleaned, and his oxygen saturations went back up. Leif's post-surgery O2 sat. goal was above 65%. He typically ran about 75%.
For me, the thought of having Leif's chest open was one of the most frightening parts about surgery. I could not begin to imagine what this would look like. Click here if you would look to see some pictures.
Leif with all his medical lines.
Four days post-Norwood, the paralyzation drugs were weaned off. On the fifth day, Leif's chest was closed. On August 25, 6 days post-Norwood, Leif opened his eyes again for the first time after surgery. His chest tubes were taken out 8 days post-op. The vent was taken out, but had to be put back in. The vent proved to be Leif's largest obstacle post-op. An NG tube was eventually started for feedings, giving him a high calorie mixture of breast milk and formula. Leif had two additional surgeries: a "touch-up" for complications on his shunt, done September 1, and a surgery for his diaphragm, which was paralyzed during a prior surgery.
Leif w/ Great-Grandpa
Once on peds, his goal was to learn to eat and gain weight. His only medications were digoxin and captopril. Leif came home with a NG tube on September 30, 1998.
