I have handed my son over to surgeons knowing they would stop his heart, and prayed that it would beat again. I have learned more than I ever thought I could. I have cried more than I ever thought possible. I have celebrated victories and milestones that others never have to. I have walked a road I never knew existed. I will walk this road forever. I am a mommy to a CHD Angel ♥ iLy Kayden James

Sunday, February 8, 2015

Faces of CHD: Devilin

Devilin Avery Roberson was born June 13,2011, at 6:37 am. He was 6lbs 13oz. We were told he was healthy and were planning on going home the next day. I noticed he was looking a little blue and called the nurse in. He was taking to get his O2 checked. The doctor that had looked at him that morning came in and told me Devilin was very sick and his O2 was 62% out of 100%. They were working on him and didn't know what was wrong. I was told UVA had been contacted and he was going to be transported. We left when he did and waited at UVA in the NICU
waiting room. Final
ly a doctor came out and told us he was still very sick and had a breathing tube and they think it was an infection and he should be home in a week. Derrick and I went back to see him. We went home for the rest of the night. The next day we come in to see him to be met by a team of cardio. surgeons. It was then we knew he would not be going home in a week and we had a long way to go. He had TGA and a VSD along with a narrow aortic arch. He was taken to surgery a week later. He came through the surgury came off ECMO 24 hours later and seemed to be getting better. About 3 weeks later he had gotten an infection in his blood and that was the first time we almost lost him. We were asked not IF his heart would stop but WHEN his heart stops what we wanted them to do. He was then a DNR his little body would have not tolerated CPR. He was a little fighter and turned around. The infection along with other problems made it too hard for his little body to recover. We were told the only thing they could do for him was try to keep his pressures up and keep him comfortable. We decided to take him off all support and let him go peacefully. He passed away Aug 9,2011 surrounded by his family.

I want to share Devilins story to help family's that are just finding out about CHD and inform people before it's too late for there little ones. We were going to be sent home the day Devilin was rushed to UVA. If we would have been sent home it's a good possibility he would have passed away that day at home, but he didn't and we got almost 2 months to spend with our little boy. We miss him everyday but Know we are lucky to get that time with him.

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