I first found out I was pregnant on April,22,2002. I was 5 1/2 weeks, and my first doctor’s appointment went great. He said I was due dec 22, and every thing was going well until l around 20 weeks when they did the triple screen test and it came back saying Madison tested positive for open nero tube defect. They set me up for a amnio test the same day at 3pm. I went in, and after the ultrasound the man said it was a girl. I cried. I didn’t want anything to be wrong with my baby. They did the amnio, and 2 weeks later it came back as I was sitting in the doctor’s office waiting. On my first real ultrasound the doctor came out and told me every thing was fine. There was nothing wrong. I was so relieved. After my second ultrasound the lady also said it was a girl and every thing looked great. That was on a Tuesday. The following Monday my doctors called me and told me I needed to come back, because the other test results came back and they needed to talk to me about them. My mom and my sis took me. The doctor came in the room and said he ran some more tests on the chromosomes, and part of Madison’s 5th chromosome was missing. I couldn’t believe this was happening to me. Here I was 25 years old and something is wrong with my baby. My doctor told me to abort my daughter. He sent me the same day to the genetics doctor, and she talked to me about what was wrong and what to expect. They did an ultrasound, and every thing looked great. They set me up for another ultrasound on her heart, and the heart doctor said it looked great also. She was growing just as she should. I went back to my doctor, and he wouldn’t talk to me about any thing else but aborting the baby. I changed doctors right after that. My new doctor, Dr. Hoffman, was so great. He did everything were supposed to. I was still going to my ultrasounds at the genetics doctors. Everything was going great until I was 37 weeks. Madison wasn’t growing like she should have been. At 37 weeks she was 3 lbs 12 oz. I went to my OB the next day, and he talked about a c-section, because Madison’s weight wasn’t good. The stress of labor could make me deliver a stillborn, so he sent me for the nonstress test. That went well, and that following Saturday I went in to labor. At 6pm, while I was in the bath, I started bleeding. It freaked me out. I called my doctor, and the doctor-on-call called me back. I told him about what was wrong with Madison and what was going on with me. He told me to come in, so I went to the hospital at 7pm. I was dilated to a 2 and 75% effaced. The doctor said he was going to let me have her naturally. An hour later I was checked again and was dilated to a 4 and was 5% effaced. .Madison’s heart beat started to drop, so they put me on oxygen and told me they were going to do a c-section. I was never so scared in my life. I just wanted my baby to be OK. They prepared me for surgery, and Madison was brought into the world at 2:03am on Dec,8th, 2002. She was 4 lbs 7oz and 17 in. long. I didn’t get to hold her, but I did get to see her for la minute. They took her away at 2:06am, and I got to see her for the first time 15 hours later. She was in the NICU hooked up to monitors and an I-V. Madison’s blood sugar dropped real low, so she wasn’t eating, and the doctors couldn’t get her to eat. I went home on Thursday, and Madison was still in the NICU. I hated leaving my daughter, but I had no choice. Madison got to come home when she was a week old. That was the happiest day of my life. On January 6th, 2003, we went to the genetics doctors, and they confirmed that Madison did have the chromosome defect called Criduchat Syndrome. The doctors said she may never walk or talk, and if she did, it would be much later in life. I am very proud to say that Madison has started to walk (though not a full-time walker) and to say certain words. She has been doing alot of things the doctors said she would never be able to do. She can feed herself; she has said Ball, Mama, Duck, and Baby. She started really walking this year with out her walker, and we no longer need her wheelchair. She has learned to chew this year also, which is a big help. She no longer chokes, and that is a BIG relief to me. So far her kidneys are doing good, so there’s no need for a transplant. She loves school and her new baby sister. She truly is my Miracle Baby, and I am proud to be her Mommy.


The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.


Phone: 763-772-3868

Fax: 866-870-9175

Prenatal Partners for Life
PO Box 2225
Maple Grove, MN 55311

Email: mary@prenatalpartnersforlife.org