DUNCAN - 2 YEARS OLDRetrun to 22q Stories
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We were living in Hawaii when I became pregnant with our second child. As we inched closer to the 20-week ultrasound mark, I became very uneasy, thinking something was wrong with my baby's heart. When the ultrasound was cancelled and rescheduled for a week later, April 8, 2011 we had no idea how lucky we were. Our sonographer happened to be, by luck of the draw, one of the few certified in fetal hearts in the state of Hawaii. We found immediately that our daughter would be getting a little brother, then overheard the tech asking an observing midwife if she knew what TOF was. We soon found out that it appeared our son had Tetralogy of Fallot, and given there are no pediatric cardiac surgeons in Hawaii, the military would be transferring me to the mainland for his birth and necessary following open heart surgery. We also knew at that point that the chance of Duncan having Down or DiGeorge Syndrome was 22% based on his CHD, but we declined an amnio.
As the weeks progressed, the news got better about his heart. If he did have TOF, he would be a 'pink tet' and could breathe at birth. However, although a large VSD was always visible, the other symptoms of TOF were not so clear. In May we decided we did not like the 'wait and see' aspect of staying in Hawaii, since now the plan was to bring a surgeon from the mainland for his needed repair. We packed quickly and left the islands for the East Coast, arriving only three weeks before Duncan was born in July of 2011.
At birth, we found he 'only' had a previously undiagnosed ASD as well as the VSD. On day four in the NICU, Duncan became hypocalcemic, and although we had arranged to save his cord blood for genetic testing, we knew at that point that he had DiGeorge Syndrome. His microarray confirmed it at eight weeks old.
In addition to the CHD and hypocalcemia due to hypoparathyroidism, Duncan suffered from GERD and at four months a feeding disorder. Due to his heart failure beginning at 11 days old, he began to contract frequent pneumonia, which delayed his open heart surgery multiple times. He had an NG tube dropped at six months, and FINALLY was able to get to surgery on May 1, 2012. Duncan was the very first surgery at the new Johns Hopkins Children's Hospital building (http://www.youtube.com/
Our sweetpea turned two recently, and although nonverbal, has been such a joy! He reached his physical milestones at the tail end of average, and currently receives PT, OT, Speech, feeding therapy, and developmental instruction. He completed an intensive outpatient feeding program at 19 months after having his NG tube for 13 months and after only ONE week in the program was doing so well it was pulled, and he hasn't needed it since! That was nearly five months ago and our bruiser is now nearly 35" tall and a whopping 30lbs at two years old.
Duncan is the happiest baby I have ever seen! He has been through so much in his short two years, has seen a dozen specialists, and is the light of our life!