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Mark received his 22q diagnosis prenatally in September 2000. Ultrasounds had shown TOF with Pulmonary Atresia, lung cyst and club foot. I had the FISH test three weeks before he was born.
Mark was delivered by scheduled C-section with a plan and team in place. Fortunately, he was stable and received a BT shunt at 6-days old. Initially, Mark did great and started therapies. At five months, he was hospitalized with RSV and was sent home with a feeding tube and oxygen. He had a right, lower lobe of his lung removed at 8 months.
During the summer, his O2 sats averaged in the 70s on oxygen, but he reached 19 pounds. In September 2001, Mark had his corrective heart surgery. During the 15-hour operation, they found that his pulmonary artery did not connect at the top of the T.
Therefore, Mark’s only oxygen came from the shunt to his bad lung. The following morning he crashed and was prepped for ECMO. Fortunately, there was a slight improvement in his vitals, so he avoided ECMO. His recovery was amazing.
Within 3 months, he ditched the feeding tube and oxygen and began crawling and walking. We were told the bovine valve and conduit would need to be replaced in about 6 years. After 10 years, his heart is still working well! He takes a daily antibiotic for his immune deficiency, but he has had no serious immune problems. Speech has improved since an oral appliance helped him manage his VPI. He receives speech therapy and is in regular classes with support.
Mark enjoys being with friends, swimming, water sports, and playing on his computer. He is always ready with a hug and loves to make people laugh. Mark struggles with fears, emotions, and limitations but seems to overcome them in time.
Truly, he is a miracle, and we are blessed to have him in our lives.