Theresa Santoro

Today marks the 17th anniversary of the birth of our precious daughter/sister, Stephanie Marie.

Every February 1st through the 10th, my heart aches for the child that is not at my dinner table. Sabrina and Steven never knew her, but they know it is she that sent them here. For this we have no doubt.

Stephanie is a story I haven't told in a while, but here it is her seventeenth birthday, and I miss her because I know she would be just as magical as her brother and sisters.

I found out I was pregnant with Stephanie just weeks after my dear friend and mentor succumbed to AIDS. Steve was a man so good to so many, it made no sense that he was taken in his prime. I don't think up to that point that I had ever grieved as much for some one as I did for Steve. His influence on me was that great.

Steve died in June, and I found out I was pregnant in August. Stephanie was due to arrive in March. In October at some point, I just did not feel like she was right. I had been sick but not as sick as with my other children, and trust me, I get SICK! It wasn't just that, but I kept getting that whisper God sends us when something is not quite right. Both my husband and doctor thought I was paranoid. But I knew. I knew something was not the way it should be. Mothers' intuition. The doctor came on board with me on or around Christmas. He was such a dear friend; he did not want to burden me with what would be horrible news. So he waited until the next appointment in the New Year to tell me that she was not growing as he would have liked, and was in fact going backwards in growth. That is the day the lights went out in Orange County, California. Oh sure, I knew she wasn't right, but couldn't it be just this once that I could be so wrong. You know a bad dream you are trying to will your body to wake up from?

Everything went so fast after that. On to the specialist to test, and find out why she was not growing. Amnio, measuring, ultrasounds, all done by angels here on earth. Remarkable, caring people who wanted me to be o.k. When finally the diagnosis came, I sat in the doctor's office staring at his wall, and I knew. I just knew before he came in. It wasn't good. Stephanie had an extra chromosome. Trisomy 18 they call it. What? How can this be? Just a few short months earlier; I sat at the funeral of a newborn baby with Trisomy 13. Newly pregnant, I remember sitting on a bench wondering how that poor mother could go through this. And now, less than six months later, it was my turn. The difference was that Maria had no idea her baby was sick, until the moment she was born. It was heart wrenching.

This was 1993, and there was no Internet with which to search. I had to go to the local medical college and do research on Medline. There was not much. All we knew at the time was that her diagnosis was "incompatible with life". Decisions had to be made. A few weeks went by while we consulted with everyone we could. When I hit the 35-week mark, we decided to induce the labor, and choose life for our daughter. She was slowly dying, day-by-day in my womb, and I wanted whatever time I could have with her and our other two daughters. Not everyone agreed with our decisions, but we had the support of our doctors and our priest, and that was all that mattered.

I chose her baptismal/burial gown. We asked our family photographer to be on hand for photos. We were surrounded by such goodness, that the negative was hardly noticed (until much later of course). The doctor predicted a four-hour or shorter labor, and we were prepared as well as we could be. I checked into the hospital on February 9th, 1993, and was hooked up to pitocin, and given an epidural rather early in the game. Perhaps to alleviate the pain of labor for a child who would not survive? And as it goes in life, we planned, and God had a different plan. What would take maybe four hours at most, turned into a full 24-hour labor. This was not going to be easy. Boy did I get sick. So very very sick. So many people waiting in the waiting room ended up sleeping chairs and on the floor. They stuck it out. My own doctor spent the night and even held my emesis basin while I got sick over and over from the pitocin and epidural. It was not good. Very early in the dawn of the day while my doctor was holding the emesis basin yet again, I felt the need to be sick, and Stephanie simply slid out. Still encumbered by her sac, waters not yet broken, there she appeared. The doctor worked quickly with no help in the room except my husband Joe, to get her free and breathing. She had the tiniest kitty cat cry you ever heard. Yet, it was the cry of life. Teeny tiny life. And in our eyes, she was perfect. Only 13 inches tall, and just over a pound, she was like a tiny little dolly. She was cleaned up and given to me to hold and love for what would be her only day on earth.

Who could believe the joy that was felt in the room? Every life, no matter how short it may be has the ability to bring sheer joy and happiness to those who love them. She was bathed. She was dressed. She was baptized, and she was loved. So many were waiting to see her, and so many witnessed her baptism. But it was I her mother who got to hold her, her entire life. Except for a few photos with her sisters and others, I held her.

We had to fight the hospital for this. It was such unchartered territory, but we fought to keep her with us, and not one needle was put into her tiny little body. She stayed. It was in the quiet of the afternoon with just me and her father present that tucked into my jammies against my skin that she slipped away. I knew the moment. It is hard to explain, but it was as if a small breeze with the sweet sound of "whoosh" came and took her tiny soul. I often felt it was my friend Steve who came to get her. Gone just nine months before, I think he would have done that for me.

The story of course, continues. So much grief, so much pain. A pulmonary embolism the next day that nearly took my life, but those are for another day.

Today is about beauty in our life known as Stephanie. As precious as ever to us, and never forgotten.

Happy Birthday sweet baby girl. We miss you. You were here for a blessed moment. Yet you live forever in our hearts.