My Story

I am the mother of three wonderful children. My oldest son is Brendan who is 8 years old. My daughter Katie is 6 and my other son Brady is 2.

I had a normal pregnancy with my first child so when I became pregnant with my second I wasn't worried at first. During the beginning of my pregnancy I felt like something was wrong. My mom told me that maybe I felt different because I was maybe going to have a girl.

After I had my AFP test (Alfa fetal protein) done I got a call that I was at high risk for down syndrome. My husband, myself and my mom went for genetic counseling and were told that my risk for my age (23 at the time) should be 1 in 1000 but by my due date on the ultrasound they were 1 in 216 and by my due date of my last period they were 1 in 76. After the counseling we had a level two ultrasound and they notice that the baby had problems with the heart. We also found out at that time the it was a girl. We were giving the option of an amnio and they of course mention terminating, but of course terminating was not an option because this was our baby and we were going to love her no matter what. We went home and decided that we wanted to have the amnio done because I didn't want to wonder for the rest of my pregnancy.

We had the amnio done and were told that we would have the results in 7 to 10 days. On the 7Th day I got the phone call. The doctor asked me if I was sitting down and told me that the baby definitely had down syndrome. I was not surprised neither was my mother. I knew it in my heart that she had it from the time of the first call about the AFP test.

During my pregnancy I would go every two weeks to the doctors for echocardiagrams of the baby's heart. When I was 31 weeks and 4 days I went for my scheduled doctors appointment and my doctor was running late so I had to wait. I was also scheduled for an echo that same day and my doctors was taking so long that I had to leave without seeing him and go to the echo. When we went for the echo they told me that I needed to go right away to the hospital that I was going to deliver because the babies heart had got worse. When we arrived at the hospital I was told that due to the size of the babies heart I would have to deliver. They also said that if I went to full term she would not make it and that there was a good chance that she wouldn't make it if I delivered now. This was on a Friday and I was told that they were going to give me shot for the babies lungs over the weekend and induce me on Monday. I was induced Monday and did not deliver until Tuesday.

Katie was born in June 18, 2002. She weighed 4lbs 1 oz and was 15 1/2 inches long. She was taken immediately to the NICU and put on a ventilator. She has ups and downs for her first week and when she was 9 days old I got a call early in the morning and was told that they were going to do her open heart surgery right away. Katie has a variant of Epstein's Anomaly. She also had a small ASD. They told us that Katie had a less than 50 % chance of making it through the surgery but she was a fighter and did very well.

For the next 7 weeks they tried several times to take Katie of the vent but had no luck. When she was 8 weeks old they gave her a trach. She spent her first 11 weeks in the hospital and when she came home she had a trach, oxygen, feeding tube and various machines to monitor her.

She was in and out of the hospital for the first few years of her life. When she was about two she started to only need oxygen when she was sleeping. She had her tonsils and adenoids out when she was 2 1/2 and when she was 3 years and 1 month old she had her trach removed. After removal of the trach she no longer required oxygen.

Katie is now 6 and in 1st grade. She still has medical issues and will require another open heart surgery to replace her value but she is doing great.