My name is Leticia and my son?s name is Nathaniel. This is our story.

I had some concerns during my pregnancy that were dismissed by my obstetrician. So, when Nathaniel was born and we found out about his heart defect I was very angry and devastated with the news.

I went to the hospital on Monday, May 14th at around 7pm after having contractions all through the day. Nothing occurred as I thought it should have. Nathaniel decided to come 3 weeks early. I had a bad reaction to the epidural and during labor Nathaniel?s heart rate was acting up. I remember hearing a nurse ask another one if she should call my doctor because the baby?s heart rate was erratic. I don?t know if she did. I was in labor for what seemed an eternity and did not open up more than 2 centimeters. Nathaniel would just not come out. Finally, I ended up having a C-section and Nathaniel was born on May 15, 2001, at 9 am.

Nathaniel was a small baby, he was only 5 lbs 3oz. and 18? in length. The first thing I noticed was his cry. It seemed so weak. A nurse commented that ?he sounded like a cat?, but I didn?t think any of it. She brought Nathaniel to me to kiss and then she took him to the nursery. I asked my husband Anthony to go with him. He later joined me in the recovery room and everything appeared to be fine.

About an hour later, the hospital?s pediatrician came to talk to us. The only thing I remember she said was ?she was sorry but our baby had a hole in his heart and he needed to be transported to a hospital?, I think at this point I stopped listening to her, I felt I was having an out of body experience. Then, I just became numb and tears began flowing.

Everything began happening very quickly after this. A team from Children?s Hospital of Orange County arrived to pick up Nathaniel. They brought me my baby so I could say goodbye. At this point I didn?t know whether I would see him again. I told him I loved him while crying. I told him he would be ok and that I would be with him as soon as I could. I told him his daddy would be with him. No body else spoke as I was giving my son and myself a courage that I didn?t feel. My husband followed the ambulance in his car.

When my husband came back to see me later that day, we talked about what we thought had caused Nathaniel?s problem and I asked him how he was dealing with it. He told me he cried while following the ambulance. My heart broke for him. But then he also said ?Well, it happened to us, and we cried but now we move on?. He then told me that Nathaniel was to have his first surgery two days after his birth. I asked my doctor to release me immediately so I could be with my son. I was released on the 2nd day after my C-section, the morning of my son?s surgery and was able to be with him.

Nathaniel had his first surgery when he was two days old. He had a B-T shunt. We later found out Nathaniel?s defect had a name. Our doctor called it Tetralogy of Fallot with Pulmonary Atresia. We were also told that he would have a TOF repair when he turned a year old. At this time I began my search for information on the web. From this first surgery Nathaniel remained in the hospital for almost a month. He had trouble feeding and putting weight on. But we were very happy when he was released from the hospital. His doctor put Nathaniel on a high calorie milk and sent him home. At home, trying to feed him became a struggle. Putting him on his tummy was a struggle. His first year was a very trying year for everyone but my family pulled through.

When Nathaniel turned a year old we got ready for his TOF repair. However, the surgery took a little longer than expected. When the surgeon came to talk to us, he told us ?that he had been unable to close Nathaniel?s hole (his VSD) because they had found another defect?. The surgeon had found that Nathaniel?s tricuspid valve had extended inside his left and right ventricles. I later found this defect is called a ?Straddling Tricuspid Valve?. The surgeon had attempted to close the VSD but found it impossible without damage to the tricuspid valve. So, instead of a TOF repair, he did a Glenn. We were devastated with this new finding.

Nathaniel stayed at the hospital for 10 days. He had trouble with a collapsed right lung but recovered quickly. But then, he also had trouble with his eating and drinking. Doctors wanted him to drink and eat more than he was doing before being released. I finally asked the doctor to please release him. That he would do much better at home. Nathaniel seemed very sad to be in the hospital. He just didn?t seem himself. It was like his fighting spirit had gone out of him. So, I pleaded with the doctor to please release him.

Nathaniel was discharged 10 days after his Glenn. He began his recovery and began progressing. Slowly, he began smiling and slowly I began to see a sparkle of happiness return to his eyes.

Our cardiologist told us he would have his Fontan when he turned either 3 or 4 years of age, or 30 lbs whichever came first. We enjoyed this respite for 3 years but his Fontan was always in the back of our minds.

Finally, Nathaniel had his Fontan in September 14, 2005. He was 4 years and 4 months old at the time. He spent 12 long days in the hospital. We struggled a lot more because he was older, understood more, and he had some issues with fluid retention. The day he was discharged we were extremely happy to go home.

Nathaniel is currently doing well. He has a lot of energy and is always on the go. He recently turned 5 years of age and has been attending a special ed. class in a public elementary school for two years. He continues to have developmental delays and some motor issues but each day he improves a little bit more. He also does not speak and is only able to make a few sounds and has a couple of actual words. But we got him private speech therapy and it seems to be helping him. He loves going to school, and loves his teacher and classmates. Everyone knows him there. He makes sure of that!

Nathaniel is my warrior?my hero. He is the light of my life!