Benjamin, born 2005On May 13, 2005, our son Benjamin was born at Hartford Hospital. He was quickly diagnosed with Down Syndrome along with Atrioventricular Septal Defect (AVSD). He was quickly rushed off to the NICU where he remained for a week before he was sent home to be monitored closely by a visiting nurse and countless doctor visits.
After numerous hospital stays which almost immediately followed, he had open heart surgery at CCMC at the age of 15 weeks on August 29, 2005 to repair the defect. He stayed in the Pediatric ICU for one week following surgery and was then sent home. While this was an extremely agonizing time for us, we were grateful that there was a surgery available to repair this defect. In the months that followed, we noticed a huge difference in his appetite and he started to gain weight consistently. We felt relieved that the surgery was behind us and we finally felt like things had taken a turn for the better.
Unfortunately, on December 12, 2005 we found ourselves back in the hospital with Benjamin, this time being diagnosed with Infantile Spasms (a type of seizure). After another week long hospital stay, we were discharged. For the next seven weeks we had a visiting nurse coming to the house to administer injections of medications into his thighs to control the seizures. This was an absolute nightmare time for us, as it came out of nowhere and we were not at all prepared for it. Our poor baby had already been through so much. Luckily, the treatment and the prayers worked and the seizures have resolved. His neurologist says that his recovery was nothing short of miraculous.
Despite all of the medical hurdles that he has had to overcome, and all of the medical issues and challenges that are still ahead of us, we thank God everyday for the gift of our Benjamin. He has brought such incredible joy into our lives and it is hard to remember a time when he was not with us. Throughout our entire ordeal, people have repeatedly said to us that "God gives special kids to special parents". I used to think that they were just trying to make us feel better, but now I really think that it is true. For all of us with children with heart and other problems maybe God chose us to be their parents because he knew we had big hearts full of love to give to our extra special children.
Story by Benjamin's parents, Laurie & Ernie - CONNECTICUT
Emily, born 2003