| Our lives changed forever on September 21, 2000 when I took a pregnancy test and it was positive. We were so excited to finally start our own family. We had waited until we felt everything was right. Everything progressed normally during the early stages of the pregnancy. I was exhausted and experienced morning sickness. On December 5, 2000 I went to the doctors and took my AFP test. Ten days later the doctor’s office called to say the results of the test were abnormal. They said not to worry, that 10 out of every 100 tests came out abnormal and only one of those 10 had a problem. I went back to the doctor on December 28 for an ultrasound. We learned that our AFP was abnormal for Down Syndrome. The doctor said it was possible my due date was off and that could have an impact on the test. We had our ultrasound and the due date was three weeks off of what I originally had. I told the doctor that I did not believe my due date was off by three weeks. I was almost certain I knew when we conceived. He decided to send us to another hospital in our area to have a level II ultrasound done. We still didn’t worry too much, but had discussed what would happen if we found out the baby had Down Syndrome. We knew we would keep the baby, but thought it would be devastating news. On January 5 (19 weeks pregnant), we had the level II ultrasound. Our ultrasound technician was rather quiet. We decided not to find out the sex of the baby. The ultrasound lasted about 45 minutes and then the technician left the room to review the results with the doctor. About ten minutes later they returned and the doctor introduced himself. As of that moment, our lives took a turn that will impact us forever. He immediately told us they found a problem with the baby. The baby had a congenital diaphragmatic hernia (CDH), a very serious birth defect. He explained that the baby had a hole in the diaphragm. This hole allowed the stomach, intestines, liver and spleen to enter the chest cavity. This leaves no room for the lungs to grow. He explained that there were hospitals that offered in utero surgery as an option and that we needed to have an amnio done to rule out any chromosomal abnormalities. We agreed to do the amnio. They then took us back into meet with the genetic counselor. This is when we learned they felt it was possible the baby had Trisomy 18. The baby had what looked like a heart defect, was behind in growth, clubbed feet, clinched fists and a two vessel umbilical cord. We were devastated. She told us that if the baby had Trisomy 18, there was a good chance we would not carry to term. Ten days after the amnio was done we got the results. They were normal. We were ecstatic. It gave us renewed hope. We went back for another ultrasound on January 22. We found out we were having a little girl. We talked about the in utero surgery option and on February 12 (25 weeks pregnant) we ended up at the Children’s Hospital in Philadelphia. We had a 3-D ultrasound, MRI and echochardiogram done. After a day of tests it was finally time to meet with the team of doctors. They sat us down and told us that after reviewing all the tests they felt our daughter’s condition was fatal. She had the diaphragmatic hernia which was severe, along with all the other defects they found in the first ultrasound. They suspected she also had hypoplastic left heart syndrome (HLHS). We went home crushed. Over the course of the following months we saw many specialists and we received the same opinion every time. We met with a local pediatric cardiologist who was able to confirm that she did have HLHS. There was nothing that could be done. She would not survive long enough to go home with us. We continued on with the pregnancy, prayed and did everything we could to give her the best chance possible. On May 23, 2001 we went to the hospital for our induction. Due to the team of doctors we had met and arranged to be with us at delivery and the fact that the hospital was one hour away, we felt this was for the best. We were 39 weeks, 1 day pregnant. I was actually in labor when we arrived and did not even know it. They started the IV and the induction drugs. It was around 8pm. The next morning the doctor came in and broke my water and started my epidural. Things were progressing very slowly. Then the baby’s heart beat started to drop with the contractions. They stopped the pitocin and her heart beat did get better, but my contractions were not regular. The doctor came in and told us he felt she might not survive labor. He felt the only way we would be able to hold our daughter alive was if we had a c-section. We agreed. The c-section was going to be performed in the NICU where the team of doctors were waiting. At 2:42pm on May 24, 2001 Madison Lillian entered the world. She was alive. She was immediately taken and put on a ventilator. I told Shane to go and be with Madison. They did an echocardiogram of her chest and took blood gases. When the results came back, it was just as we had been told. Her defects were too severe. She did not have enough lung tissue to live on her own. We decided to take her off the machines and spend as much time with her as we could. Two hours after she was born and 30 minutes after we got to hold her for the first time, Madison left this life in her Daddy’s arms. In that short time we were able to have her baptized. We kept Madison for another 6 ½ hours that night. Our family and friends were able to see and hold her. One of the hardest things Shane and I have ever had to do was to leave the hospital a day and a half later by ourselves. Six days later, on our due date, May 30, we buried our daughter. When all the pathology results came back, there was no genetic trace found. We did learn that Madison also had a cleft palate. They told us they did not know what caused Madison's defects. Madison changed our lives forever and has taught us more about life than anyone ever could. Even if we had known from the beginning the outcome, we would do it all over again. Madison was worth it all. She spent a moment in our arms; she’ll spend forever in our hearts. |
