I don’t know if I became more aware of miracles because of my circumstances or if God made sure that I became aware of them. I guess it doesn’t really matter how you get a message as long as the point is taken. And the point was, I needed a miracle and they do exist. I felt that I was in this situation for a reason and my job was to do what felt right not to do what made sense. I followed my heart from that point on. This helped me get through the onslaught of specialists and tests that I was about to be exposed to.

The people at the Spina Bifida office were wonderful. They gave me the full tour of the facilities and introduced me to the surgeons. Everyone seemed very optimistic about the fate of a child with Spina Bifida and although my ultrasounds were unable to determine the size of the omphalocele (hole in the abdominal wall) they assured me that most were very small.

Now, on the other end of this scale, you have the Obstetrics Clinic. After my insurance information was given, I was taken to the basement where the clinic was held. The huge rooms were packed with people. I immediately got the impression of an over crowded shelter on a cold winter night. Partial walls separated the three waiting areas and chairs were placed in every possible location. I can’t remember ever seeing that many miserable people in one place. It was at this clinic I was told my baby probably had a chromosome disorder that would cause things to keep getting worse until life could no longer be supported either in utero or shortly after birth. The option for an abortion was left open to me up to the eighth month. Not only was this option left open, it was brought up every two weeks at the appointments. Early in my pregnancy, I almost miscarried. My thinking on the matter was if the baby was strong enough to survive that, I had no right to deny it the chance to live. It would have been a great help to me if others would have accepted such a difficult decision with out their words of wisdom or looks of disapproval. The only thing that scared me more than the thought that my baby might die was the thought that my baby might live. I knew I was not prepared to care for another healthy baby let alone one that might require a lifetime of my care. I needed support, not opinions. This is where my dependence on miracles and God came into play. Without the belief that I was not the only one in charge of my life, I could not have made any decisions. I followed my heart and believed that God would make it okay. This gave me the strength to hold fast against well-meaning relatives that believed the pregnancy should be terminated for my own good and the good of the baby. I held fast against doomsday doctors that believed this child was a lost cause and a burden on society. The baby helped me hold fast against myself when my determination wore thin. When I started to think they were right and this could not possibly end well, the baby would go on a kicking spree as if to say "If I were that bad, could I do this to your ribs?"

Just when I would start to feel better about the situation it would again be time for my bi-monthly appointment. I would leave the hospital with watery eyes and a red nose, go home and cry myself to sleep. I made one phone call after every appointment to give the sugar-coated version of the days events, counting on that one person to inform the rest of the family. Then I would take the phone off the hook. I did not have a strong enough will to be reassuring to family and friends. Since I felt compelled to do so, I avoided as much contact as possible with the people who were the most concerned for me. I realize this must have been very difficult but my needs had to come first. Since the real challenge would come in the event of my baby’s survival, I decided to find all the information I could on Spina Bifida. It involves a hole in the spinal column. The spinal cord protrudes through this hole and the nerves are damaged from that point down. The higher the hole, the more paralysis you can expect. Watching the baby on the ultrasound and feeling my bruised ribs made it impossible for me to believe that this child was paralyzed. However, I was repeatedly cautioned about the natural tendency to deny the truth in such situations so I quickly learned to keep my feelings about that issue to myself.

I knew I had to face the fact that my baby might not survive, too. I wasn’t capable of preparing for the death of my child. How could I have been? How could anyone? The only thing I could think to do was deal with the practical problems that death causes such as funerals and burials. So, I called the local funeral home and found out everything I would need to do. This gave me the freedom to concentrate on my instincts that told me my baby would thrive as well as survive. Denial? Maybe, but I think denial is just fine if tempered with rational actions. Do what must be done and think/pray everything will come up roses.

An amniocentesis verified that the baby’s chromosomes were normal. She was not predestined to die. I felt we had just scored a crucial goal in our game against the doctors. I imagine there is some kind of psychological term used to describe this adversarial feeling toward the doctors but I don’t know what it is and I don’t really care. I think the anger I felt was an important part of the process of recovery. Also, it felt good to be mad at someone. So, anger was good. Staying away from well-meaning nay-sayers was good, but I needed something else. I needed to search out people who would support me. I found this support at a local church across the street and in a good friend. They made me realize that you don’t have to be an angel to believe in miracles and you don’t have to be a saint to experience them. I don’t want to insinuate that I handled all my problems or even most of them with total wisdom. Many of my actions around that time were off the wall, spontaneous, and just plain bazaar. My friend, for example, introduced me to heaven and I put him through hell.

She was born by C-section on June 24, 1989. When the big moment came, she seemed to be instantly surrounded by eight or nine people I had not noticed before. I realized right away she was not crying, but when I could get glimpses of her as people shifted their positions around the isolette, I saw her color was good and her eyes were wide open. She was okay. I knew this instinctively. The pediatrician came to my side, kneeling close. His face had the serious concern of a mortician addressing a bereaved family member. He explained the opening in her abdominal wall was much bigger than anticipated. He wanted to send her to Children’s Hospital because the Urologist there would be able to help her more than he could. The flight crew from the helicopter brought the baby in so I could see her before she left. When I saw her, all my fears dissipated. She was so alert and healthy looking. The only thing that even hinted at a problem was a bulge on her belly that was covered by gauze and plastic wrap (to keep in the heat and moisture). Her little toes were pushing so hard on the isolette they were turning white. Maybe her legs would not be very strong, but she was not paralyzed. Her eyes were huge and very intently looking at everything. She had the appearance of a very wise person. I knew instantly she would make it and she had a purpose for being here. I told her to be strong. But I felt she already knew what she had to do. So all that was left was to say good-bye and I love you.

Children’s called me with the bottom line. The baby was born with what is called Cloacal Exstrophy (A large opening in the abdomen.) This defect caused her to have defects in many other organs including her intestines, bladder, ureters, urethra and kidneys. Her pelvic bones were also deformed as a result of the cloacal exstrophy. The Spina Bifida evaluation and operation could wait because the lesion was skin and fat covered. This protected her spinal cord from infection while they focused on the defects that were life threatening. I don’t think anyone understood my lack of depression. I knew in my heart my baby would not die and that she was not paralyzed. I understood all along we would have to deal with problems, but my worst fears were not realized. I was as happy and as proud as any other mother on that floor. My reaction may have appeared to be a lack of concern or understanding of the situation but I was too relieved to care much about what anyone thought.

We have now accumulated a total of almost 3 years in the hospital and well over 20 operations. But as a result I have a very intelligent, wise and active eight-year-old. She proved the doctors wrong one last time. She is not a burden on society, she is a blessing to society. Together, we have learned so much, but our journey is far from over.

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