Jafar, born 2007

My son  was born on June 4, 2007, 7lbs and5oz. He was diagnosed at five months gestation with Transposition of the Great Arteries with a VSD.

 

Jafar was born at Columbia Presbyterian Hospital in NYC. It was the best experience considering the circumstances. Two days after birth, Jafar had the arterial switch surgery. All went well and the surgeon was able to repair everything in one surgery. There were no complications. He was in the NICU for two weeks and two days. He went home 5lbs. on Lasix and Prevasid. We had no problems at home. The only concern I had at home was his heavy breathing. Since he was not in distress the doctor felt he would grow out of it. They gave me a nebulizer as well.

 

One day at 7 weeks old, an obstruction was found during a routine visit. They admitted him immediately. This was unexpected. The diagnosis this time was Coarctation of the Aorta with Pulmonary Stenosis. The next day they sedated him and sent him to the cath lab. This didn’t work. They would have to open him up again. It had only been seven weeks since the first surgery. This hospital stay was one week and a day.

 

He went home with a paralyzed vocal cord, a referral for PT and speech and feeding therapy, and Lasix and Prevacid. For feeding he had to have his formula “thickened up” with a product named the same. We haven’t experienced any cardiac problems since.

 

Jafar is doing well now, very happy and incredibly bright. And as much concern as I have had over these few years about the possibility of developmental delays caused by the heart bypass machine, he’s been reaching and exceeding all his milestones. So far so good.

 

Story by Jafar's mom, Vanessa - New York