I had 2 healthy pregnancies prior to Gracie. Annie is 8 years old and Kathleen is 5yrs old. Before Gracie, I had 2 miscarriages in the first trimester. Then we conceived Gracie. The diagnosis was made on Grace at about 19 weeks. As I was on the table having the ultrasound you could tell there was something not right. The technician got real quiet and then she went to get the attending physician. My heart dropped. I grabbed my husband's hand harder and started saying some intense Hail Mary's. All I remember is the shock I went into. They are saying a million things and you can't hear any of it. I wanted it all to go away. How can this be happening to us. Our world came crashing down around us in a matter of minutes. Our baby was no longer our baby, instead in the medical community she became a "fetus with a defect". From that point on we were in for the fight of our lives and our baby's life. We were under attack as soon as they told us there was a problem. We said that termination was not an option for us. They (medical personnel) looked at us like we were from another planet. The attending physician called us into her office and explained that from the sonogram that it looked very likely that we had a Trisomy 18 baby. She suggested we get an immediate amnio so we could "make our decision". One thing my husband and I kept repeating was that termination was not an option for us. My husband said to me, "I know you, if you terminate, you will never sleep another night in your life". I looked at the calendar and saw 4 more months of an uncertain pregnancy and began to cry. He said, we will take this one day at a time, we will do this together. I never loved him more than the day he said that.

The attending physician sent us to the genetic counselor that was affiliated with the hospital. Things went from bad to worse. The counselor emphasized how horrible and fatal this condition was. We told her that termination was not an option for us. I asked her if she had any support for me. She said she would get back to me and give me the name of someone who had a child like this. I am still waiting… She asked if we wanted to see a priest. I thought that would be a great idea. I was looking for spiritual guidance to encourage us to continue. She sent us to a priest out east from where we were. Boy, were we in for a shock! He sat us down and basically told us how hard it would be to continue a pregnancy like ours. "You know you are going to get bigger and bigger each day - there will be a lot of suffering. I couldn't believe my ears! I was expecting the priest to give us encouragement, support and resources on how to do this. Instead, he told us we should pray for a miscarriage and he told me how to bury my baby. We left his office without any resources, alone and helpless. This was truly the darkest day. I had to hunt for and research support groups on my own. I really would have appreciated getting this information from the genetics counselors or the priests I spoke with in the first days, but once I connected to this support, I realized I was not alone.

My OB was in for an education. He had never delivered a baby like this. He respected my decision to continue the pregnancy and said he would support us. What I realized, was that my baby and I were going to be pioneers - and we needed to teach the professionals who were dealing with us how to do this. [Test] results confirmed full T-18.. I met with the Head Nurses of Labor and Delivery, Nursery, Neonatalogist and VP of the Hospital before Grace was born. The discussion included our wishes that nothing extraordinary be done for Gracie. We had the information that she had a left hypoplastic heart, so we were anticipating only 3-5 days with her, tops. These are decisions no parents should never have to make. I know that as we were crying in the meeting that Gracie was kicking me harder than ever. Almost as if to say - I'm still here - keep fighting for me! Birth was by scheduled c-section, it was the scariest day of my life. I knew as soon as she came out of my body the clock started to tick. Time was running out. I was prepared for a very short life for Grace. I even thought that maybe her time inside me was all I would get. I cherished every kick and move she made.

The hospital had prepared so well for us it was unbelievable. I remain impressed at the level of compassion and the professionalism the staff showed us during our stay. They provided a private room for the family to gather and the most wonderful nurse. She held my hand. We had our priest available to do an emergency baptism if needed. The whole staff was informed and knew of our situation. In fact, certain personnel volunteered to work our case because they were so touched by our situation. When the OB took Grace out, he brought her to me and I fell in love. She was beautiful... The priest went to tell my family the good news. Everyone couldn't believe she was alive. We were all celebrating --Grace was alive! It was the happiest day. I had my precious daughter and she was mine. I didn't let her go. We took Grace home after one month in the hospital. We weren't going to do anything to interfere with her condition to extend her life. We kept her as comfortable as we could. She would have periods of apnea. She kept coming back from them, even if she stopped breathing for 15-20 minutes. That is why we called her "Amazing Grace." We held her when she had apnea and just talked to her. "Come back, Gracie," we said over and over again. She listened to her parents most of the time on this one. We couldn't fix what was wrong. We could only love her.

Grace had some slight dysmorphic features. She had low set ears, clenched fists, rocker bottom feet, and a bit of a slope to her forehead. All of her little things made her special to me. I didn't see Trisomy 18, I just saw my precious little girl. That is what most people realized when she was born. She wasn't the monster the doctor's had painted for me four months before -she was just a little sweetheart. All she needed was love. Boy, did she get it! The best part of being at home was that we were a family. I got to be Grace's mommy in my home. Her sisters could really get to know her. We had many visitors - everyone wanted to hold "Amazing Grace". We took her to Grandma's, the mall, the park and we took several walks around the block. We tried to make it as normal as we could. But she was getting sicker.

The night before she died - I was very calm - I didn't even wake my husband up. I read the Bible and slept with it under my pillow, with Grace on my chest. I read the 23rd Psalm with her. I felt at peace. The next morning, my husband looked at Grace and we both thought it was bad. It was exactly her 2 month birthday - we sang happy birthday to her. I kept holding her - and she must have slipped away shortly after that. Grace passed away Thursday, Sept 26, 2002. Her funeral was Saturday, Sept 28, 2002. This was also my birthday. The church was packed. I go to her grave site often. It is hard to believe she is not physically with me any more... She is definitely in my heart. I am forever changed. We have no regrets. Grace brought out the best in people around her. The doctor's that worked with us told me they will never look at a case like this the same again. Grace is a teacher and a pioneer. She was the most helpless creation - she brought out the goodness of people. My husband I say again and again that people are good. Grace provided an opportunity for many people who we knew and who we didn't know to love unconditionally. She did more in two months than some people do in a lifetime. She was pure love. She brought my husband and I closer together, made our faith stronger and made me appreciate all of the good things I have in my life. She also showed me that death is peaceful. My two other little girls know that too. As much as I miss her, I know she completed her job here. Her impact goes beyond us. I thank God He blessed us with her. She was worth it all. Grace was truly "amazing".

Reprinted with permission of The Sisters of Life, www.sistersoflife.com

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