Tuesday, June 27, 2006

Boehne family heart story.

Our little Zander was born on September 7, 2005. Expecting a perfectly healthy baby we were devastated to learn that Zander had a rare heart defect. He had Total Anomalous Pulmonary Venous Return (TAPVR). His pulmonary veins were fused together and on the wrong side of his heart. He was not able to receive oxygenated blood back from his lungs. His oxygen levels were in the 30's. He was life-flighted to St. Louis Children’s Hospital where at one day of age he had open heart surgery. The doctors were careful about showing any optimism. After the surgery he had an intracranial bleed which caused seizures. We were told that because of the lack of oxygen he suffered and then the brain bleed to expect Zander to have significant brain damage. We were able to take Zander home at 4 weeks, but two days later we were life-flighted back to St. Louis. He was in respiratory distress. He was having pulmonary hypertension due to his pulmonary veins becoming blocked.

His surgeon performed another open heart surgery called a marsupialization when Zander was two months old. This surgery involved taking the lining of his heart and creating pouches to let his pulmonary veins drain in to. Our surgeon, Dr. Huddleston, gave us a 50 % chance that this surgery would correct the problem. Unfortunately we were on the wrong side of the 50%.

Although the operation corrected the issue with his heart, we were too late to save his lungs. We were told that Zander’s only chance for survival was a bilateral lung transplant. Zander was listed for transplant on November 18th and on December 4th he received his transplant. We were able to come home when he was six months old. We came home with Zander still being on the ventilator 12 hours a night and with a g-button for feeds and medicine.

Although Zander is developmentally delayed in his motor skills, he is showing no signs of brain damage like the doctors had told us to expect. We were able to take him off the vent completely last week and are hoping to remove his trach around his first birthday. This has been an incredible journey with both ups and downs, but we could never imagine life without our little guy. We know that someday we will have to go through this again, as transplanted lungs do not last forever. He is truly a miracle in our eyes.

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