Saving Little Hearts

In 1997, right after we got married, we came to the U.S from Japan. Since then we have had a challenging and hard-working time. Eight years later we finally got ready to have a baby. We were so excited when we found out about my pregnancy. It was summer of 2005. My pregnancy started with terrible morning sickness but, other than that, the baby was growing very well. While I was enjoying my second trimester, my ob-gyn doctor told me that my baby was small and they would keep watching the baby closely. At that point, we thought it was just because the doctor was not aware of the fact that the size of an Asian baby is usually smaller than that of a Caucasian baby.

At my 7 month pregnancy check up, my ob-gyn took an ultrasound and sent me to see a specialist at a regional high risk pregnancy center. He took an ultrasound again and told us that something was going wrong with my baby’s heart. I said “What?” in my mind, but I was so shocked that I couldn’t say anything aloud. Then, in that afternoon, we saw a pediatric cardiologist at children’s hospital. The cardiologist took an ultrasound and came back to us with a picture of my baby’s heart. We were told that our baby girl had a congenital heart defect (CHD) called Tetralogy of Fallot (TOF). She also told us that our baby needed open heart surgery to fix the defect right after her birth or maybe at 3 months old. Timing of the surgery depended on how blue she would be. Even though usually my mind doesn’t get agitated much by hearing something in English, because it’s my second language, I remember my eyes were filled with tears. Since we found out the problem before my baby’s birth, we could prepare and plan the delivery but it was still a hard time for us to wait without any treatment.

On April 06 2005, our first baby girl was born by C-section and her weight was 5lb 8oz. She was small but pink. So, after checking her heart, the doctor decided to wait for the surgery until my baby became 6 months old. It was good news in the whole terrible situation.

Until the surgery, our baby had cardiologist’s check-ups every month, and we made contact with members of the Saving Little Hearts (SLH). They introduced several other heart families who kindly shared their story. Those stories were very helpful for us to get prepared physically and emotionally for the surgery.

Our baby’s oxygen saturation was gradually going down and the time finally came. At that time, our daughter was 4 months old.

The open heart surgery went excellent and recovery started pretty well. We expected that we could go back home soon but, on the 3rd day of the recovery a complication occurred. We needed to wait until the problem was removed and, after 18 days of staying at hospital, we finally came back home. It was very tough time. Since then our daughter has been very well and she is a healthy toddler now.

As you know, some babies with CHD need heart transplants. At this point Japanese government doesn’t allow organ donations from children under age 15. So they need to come to the U.S. to have transplants done and usually it costs about 1.5 million dollars. Since they don’t have health insurance in the US, they need to pay the whole amount. Not all of Japanese babies that are in need of an open heart surgery or transplant could come here. We think that we were lucky in that our baby could have an excellent surgery in the US with the support of health insurance.

During the stay at the hospital, families who we met through SLH came to see us even with it being a 3-hour drive. It was very kind and supported us very much because we do not have any family members here in the US -- they all are in Japan. Last but not least, we really appreciate SLH’s activities!