Alex's Story: Parent's Letter ProjectTetralogy of fallot- Alex's mom

Alex's Story Tetralogy of fallotHi my name is Jennifer. I was on my second pregnancy with my second son and I thought everything was ok. When I went into labor on January 28, 2004 with Alex, I thought it was going to be like the first one, but every time I had a contraction his heart rate would go down really low and no one knew why. When I finally had Alex, he was tiny. He only weighed six pounds and 12 ounces and he looked healthy. When his doctor came in the next morning for his routine check-up, he noticed a heart murmur, so they took him back for an EKG and a sonogram of his heart. It was discovered that he was born with tetralogy of fallot. Then I remember being woken up by the nurses telling me there was a doctor on the phone from Children's National and he needed to talk to me.

When I went back in the nursery, Alex wasn't there; they had moved him into the Neonatal Intensive Care Unit (NICU). I got on the phone with the doctor and all I remember from that phone call was that my son was very sick and he needed to come there right away. The nurses said I fell on the floor and I was in a daze. I was only 18 at the time, so I called my mom and I was crying so badly she couldn't understand me. The hospital took a picture of me holding my son when he was a day old. He was flown to Children's National where he spent many days in the NICU.

When I was finally able to take him home I met with the doctor to talk about Alex and his condition. He explained to me that he had a dime-sized hole in his heart and it was in between both chambers of the heart, so we needed to make a follow-up appointment as soon as possible. When I brought Alex home, my family and I had to learn CPR.

We were able to get him into surgery when he was six weeks old. That was the longest ride of my life when I had to bring him back to the hospital, knowing anything could go wrong. His father, and my step-father and I were there in the waiting room waiting to be called for him to go back to the operating room (OR). When they finally called his name, we walked to the OR doors. Handing him over to the nurses was one of the hardest moments of my life. I kissed him on his little forehead and watched them walk away. I cried so much. Then we went into the waiting room and just waited.

When the nurse came in and called for Alex's mom, my heart sank and I started crying again. The nurse came over and apologized and said nothing was wrong, but she just wanted to inform me that they had made the first cut and surgery had began. The nurse came in several times during the surgery to let me know every step. After the surgery the doctor came in to tell us that Alex did very well and he was in the Pediatric Intensive Care Unit (PICU). He explained what he did and even gave me the left over portion of the patch they put inside his heart, which I have put away with all the rest of his first things. He also explained to me how my child would look and what to expect when I saw him for the first time.

My step-father couldn't pull himself to go see him. He said that was just one image he didn't want to remember. He wanted to see him the same way we brought him in. Alex's father and I went back to see him but his father didn't stay very long because the tears wouldn't stop coming. I kissed my little boy on his head and thanked God that he came out ok.

The nurses explained to me what every hose and monitor was for. Alex was only supposed to stay for up to 10 days but ended staying two and a half weeks because he refused to eat; taking the bottle and then refusing the bottle again. When I finally got up to see him, they let me spend the night in his room with him and the next morning the doctor came in and informed me Alex had RSV and one of his lungs collapsed.

He was finally released when he was eight and a half weeks old. We had to see the cardiologist every two months and then it went from two months to four months and then to six months and now its just once a year. Alex is now six years old and is doing very well. He is healthy and you would never believe he went through all of this at a young age. He is proud of his scar. He likes to tell people he is special and when they ask him why, he will tell them he had a bad heart and the doctors at Children's National made it all better. Alex is thriving and is doing so well. He has no restriction or limitations. All of this wouldn't have been possible without the doctor and nurses at the hospital.


Alex's mom, Jennifer

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