Ben, our superhero

I spent part of my pregnancy on bed rest and was being monitored for preeclampsia. We never knew that anything might be wrong with our unborn child. At every ultrasound, including an extensive one performed three weeks before the baby was born everything appeared to be alright. After my blood pressure continually kept rising my doctor decided it was best to deliver our baby early. Ben was born by cesarean section on February 21, 2008, five weeks premature. He weighed in at 6lbs. 7 oz which was a great weight considering he was technically a preemie being born at 35 weeks gestation. Several hours after he was born he was transported to Children’s Hospital Central California for breathing difficulties. It was not something to be too alarmed about because we knew his lungs might still be premature. I had yet to hold him and had only kissed him moments after he was born so it was emotional to have him taken by ambulance to another hospital. After his first day of life the doctors did a chest x-ray and sonogram and found that he had two holes in his heart and a valve in need of repair. His Congenital Heart Defects (CHD) were diagnosed as AtrioVentricular Septal Defect (AVSD) and Patent Ductus Arteriosus (PDA). I was still at the birth hospital when I received a call that they had found a problem with his heart and they would go into detail once we arrived at the hospital. I was devastated and scared to say the least. Luckily I was packed and waiting for my husband to pick me up since my doctor was letting me go early from recovering to go see Ben. We couldn’t get to the hospital fast enough. He was not in any danger at that time but I really didn’t know what was going on and I had never even held him at this point!

We met with different nurses and doctors and they asked us several health questions and ran tests for Down Syndrome which ultimately came back negative. We were told that AVSD is a common heart defect associated with Down Syndrome. Ben’s heart condition was not a health risk for him at that time luckily. Of course the surgeon could perform the repair at any time but it would be best for Ben to have time to gain weight andgrow. We were told that he would most likely need the surgery before he was six months oldand explained all of the signs to look for with heart failure. It was frightening to be told to watch for labored breathing, sweating, poor eating, exhaustion and blue lips and extremities.

A week after his birth Ben was released after his lungs matured and his jaundice cleared up. Taking him home was joyful and scary at the same time. We had a follow up appointment with the cardiologist three weeks later and he was surprised that Ben had gained weight and was very healthy. A lot of “heart babies” have trouble gaining weight but Ben had never been shy of eating! The plan of action was to still do the surgery at six months of age after he gained even more weight with the goal being 10-11 pounds. We were told to come back in a month. At that next visit once again to the doctor’s surprise, Ben was still very healthy and gaining a lot of weight. He was over 12 pounds! The surgery was moved up. Our Cardiologist’s said, “Why wait for symptoms of heart failure when he is at a perfect weight for surgery?” It was a shock to then be planning for surgery a month later.

On May 20, 2008 Ben had his open heart surgery. It was a long day of waiting with family. There was so much love for Ben and so many people praying for him that day. The nurses were so supportive and gave us updates throughout his surgery. His recovery went well with only a few bumps along the way. One of those bumps was a common leak in the Mitral Valve post open heart surgery which was expected to close or shrink before leaving the hospital. We had a couple of scares along the way including his heart rate skyrocketing after surgery which we were told is not uncommon and a medication overdose inwhich our son stopped breathing. Luckily the staff was quick to respond and we had complete trust in our surgeon.

Everyone was amazing at Children’s Hospital Central California. We were so thankful to the staff and blessed to have Ben survive the surgery.

The night before Ben was to be released to go home our surgeon informed us that the leak in his Mitral Valve did not close or shrink as expected and he will need another surgery in the future. The hope is that it would be at least 6 months to a year later if not several years. We would have follow up appointments to monitor his heart closely. Of course Ben will spend his entire life under the care of a Cardiologist however the visits would be more frequent. It is now going on 18 months since his surgery and we all hope and pray that surgery will be even farther off into the future. He continues to grow and enjoys eating, playing with his siblings and still has no visible signs (except his scar!) of heart failure.

CHD is America’s #1 birth defect and I may not have known today what CHD was if it wasn’t for it becoming a part of our lives. So many families are affected by CHD which is why my passion for starting a chapter support group of It’s My Heart in Fresno began. Many children are diagnosed before they are born; some right after birth like my son and then there are many that are not diagnosed until they are showing signs of cardiac failure.

Ben has changed my life in so many ways. I hope that his story might change yours.

If you live in or near Fresno, California and would like CHD support please email me at pamela.camit@itsmyheart.org , call 559-355-2676 or visit our website at www.itsmyheart.org . We meet the first Tuesday of every month for meetings and are excited to be having our very first CHD Awareness Run/Walk and Family Fun Day on Saturday, February 27, 2010.