Congenital Heart Disease Support Group
Congenital heart disease is heart disease in the newborn, and includes congenital heart defects, congenital arrythmias, cardiomyopathies, and hypertrophic cardiomyopathy (HCM). CHD can describe a wide variety of different abnormalities affecting the heart. CHD occurs when the heart or blood vessels near the heart does not develop properly before birth.
It took my husband and I a year and a half to conceive, this is our first. I was so happy. My pregnancy was really easy with no complications. On March 25th after less than 12 hours of labor I gave birth to our beautiful son Callan after a very short time of pushing. He was 7lbs 3oz.
Everything seemed to be fine. The on-call hospital pediatrician was just a little concerned because he thought Callan's lips were a little blue. He didn't think it was much to be worried about and he would have a specialist look at him the next morning. The next morning came around and they had taken him to be checked out. He was gone for hours. My husband had walked by the nursery where he was and saw that the curtains were closed. He thought something might be wrong but he didn't want to worry me so he didn't say anything. It was early afternoon before we knew what was going on. The cardiologist came in to let us know that Callan has a heart defect called Tetralogy of Fallot. We were devastated. They let us know he was being transferred to Rainbow Babies and Children's Hospital right then. We got to see him right before he left, hooked up to a breathing machine. I thought I would die just seeing him like that.
I was released early from the hospital so that we could go to Rainbow. When we got there he was in the NICU hooked up to a ventilator and several IV's and monitors. For days I couldn't bring myself to look at him for more than a couple minutes since I would break down. He underwent several tests and echos. 4 days after he was born he went down to the cath lab and they were going to attempt to place a stint. Unfortunately they weren't able to and they were immediately taking him to have surgery to have a shunt put in. We hadn't even seen him that day and they rushed us down to see him before the operation. He came through fine. We were taken down to the PICU for post-op where we were for another week and a half. He was still on a ventilator, though they slowly weened him down over his stay there. He was then able to start getting breastmilk through an NG tube. I was unable to breastfeed him but had been pumping. He had dropped to under 6lbs after surgery. He was then transferred to the NICU step-down unit to work on going home. We worked with cardiology and neonatology tp work on adjusting his meds and working on getting him to feed on his own. After 4 and a half weeks we finally got to go home. He still wasn't eating much on his own so he went home with the feeding tube. We're still working with him with speech therapy.
Callan is 3 months old now and over 11lbs. He's starting to eat a little more, but still a struggle. Some time in the next 2-4 months he will have another surgery to have the full repair done. He's a good baby overall and his smile just kills me :) This little one has me wrapped around his finger. I'm very nervous about the next surgery but I know it has to be done and that he will be fine. I'm so grateful to have such great friends and family to support us through this.
Everything seemed to be fine. The on-call hospital pediatrician was just a little concerned because he thought Callan's lips were a little blue. He didn't think it was much to be worried about and he would have a specialist look at him the next morning. The next morning came around and they had taken him to be checked out. He was gone for hours. My husband had walked by the nursery where he was and saw that the curtains were closed. He thought something might be wrong but he didn't want to worry me so he didn't say anything. It was early afternoon before we knew what was going on. The cardiologist came in to let us know that Callan has a heart defect called Tetralogy of Fallot. We were devastated. They let us know he was being transferred to Rainbow Babies and Children's Hospital right then. We got to see him right before he left, hooked up to a breathing machine. I thought I would die just seeing him like that.
I was released early from the hospital so that we could go to Rainbow. When we got there he was in the NICU hooked up to a ventilator and several IV's and monitors. For days I couldn't bring myself to look at him for more than a couple minutes since I would break down. He underwent several tests and echos. 4 days after he was born he went down to the cath lab and they were going to attempt to place a stint. Unfortunately they weren't able to and they were immediately taking him to have surgery to have a shunt put in. We hadn't even seen him that day and they rushed us down to see him before the operation. He came through fine. We were taken down to the PICU for post-op where we were for another week and a half. He was still on a ventilator, though they slowly weened him down over his stay there. He was then able to start getting breastmilk through an NG tube. I was unable to breastfeed him but had been pumping. He had dropped to under 6lbs after surgery. He was then transferred to the NICU step-down unit to work on going home. We worked with cardiology and neonatology tp work on adjusting his meds and working on getting him to feed on his own. After 4 and a half weeks we finally got to go home. He still wasn't eating much on his own so he went home with the feeding tube. We're still working with him with speech therapy.
Callan is 3 months old now and over 11lbs. He's starting to eat a little more, but still a struggle. Some time in the next 2-4 months he will have another surgery to have the full repair done. He's a good baby overall and his smile just kills me :) This little one has me wrapped around his finger. I'm very nervous about the next surgery but I know it has to be done and that he will be fine. I'm so grateful to have such great friends and family to support us through this.
I've had three open heart surgeries (ages 18 months, 3 years, and 18 years), a kidney surgery (at age 5), and an Internal Cardioverter-Defibrillator implanted earlier this year.
Currently, I am a graduate student in a Masters in Public Health (MPH) program at The George Washington University. I've traveled internationally to developing countries several times to provide assistance in places where it's needed the most. I'm also an Emergency Medical Technician and hope to go to medical school one day.
If you ever want to talk, or need some support from someone who has lived it and experienced a lot in the world of congenital and acquired heart disease, or if you just have questions, please feel free to message me. I know what you are going through is hard, and it certainly would have made it easier when my parents and I were going through it if we had more of a "success story" to talk to. I wish you and your son the best of luck - he is adorable!!