Jackson's Heart Story

Told by his mother Kristen.

Diagnosis: Atrial Septal Defect, Congenital Heart Block
At: 20 weeks

Look at me now, October 2008

I am a survivor, May 2009

Our story begins with the pregnancy of our second child. At 20 weeks of pregnancy we were on our way to the OB office to find out the sex of our baby. What normally is a very exciting and happy time for most couples turned out to be a life changing appointment for us. During this visit the ultrasound technician not only found out that we were expecting a boy but we also found out that we had a baby with a heart defect. All that we knew at this point was that his heart rate was very slow and we were not sure what was causing it, possibly a virus that I had that would be resolved with an antibiotic. I was sent for blood test and they showed that I tested positive for an auto immune disease that attacks fetal heart tissue. The doctors at the fetal specialist started me on doses of oral steroids to suppress my system and hopefully cut back on the effects it had on the baby. We started weekly visits with my OB, fetal specialist and now a pediatric cardiologist all three watch ed me as well as the baby very closely. We tried to stay positive but were so scared at what was going to happen. As the pregnancy progressed and the weight I gained from the steriods increased, Jacksons heart stayed stable. We all agreed that when it came time for delivery that he would be a scheduled C-section so that he would not undergo any extra stress to his heart during delivery. On February 5, 2004 the fetal specialist decided it was time to have Jackson. I left from my appointment with them and went to my OB appointment to have the OB agree that it was time. I was admitted that afternoon and monitored prior to the surgery. We discussed in the past that with his condition there was a possibility the he would be born and go into surgery immediately to insert a pacemaker. His heart the whole time was 1/2 the rate of a normal baby and they felt he would not be able to thrive outside on his own. Jackson was born with no complications in a room full of specialist a waiting his arrival and anticipating the worst case scenario. The doctor was pleased with the surgery and Jackson was looking great, he did not have to go to surgery however he did have to go to the neonatal intensive care unit to be monitored. He continued to do great in the days that followed and no pacemaker was needed. We left the hospital after 4 days in NICU with the diagnosis of Congenital Heart Block. I must say that my husband and I were a lot more scared bringing Jackson home than our first child. We were having to monitor his heart rate with a stethoscope periodically through the day and even at night. Pregnancy is difficult to begin with even when you have a normal, routine pregnancy without complications. I felt that we had mentally prepared ourselves for the worst situation, the whole time it was very emotional and each doctor appointment was very scary. I find that sharing our story with others helps me deal with the emotions, we are advocates for heart disease and participate in heart walks and this helps us feel comfort in our story.

~Kristen, July 2009