"Some things are true, whether you believe them or not."
- Nathanial Messenger, 'City of Angels'
I recall the day as if it were yesterday, even though it's been over eleven years now. I had just turned 36 years old, been divorced for about a year and a half, single parent of two girls, living in Florida and found myself unexpectedly pregnant with my third child. I wanted to do what was right by all of my children, so I made the decision to put this child up for adoption. I contacted an attorney's office and started making the plans for a private adoption. Within a month, I met a couple who I "clicked" with, who had been trying for years to have a baby, and wanted one so desperately. They were a christian couple with strong spiritual belief system. I liked what they had to say and how they acted around my other two children. I believe that I was making the best decision for all concerned until that fateful day in December. I was 17 weeks pregnant and we had gone to my doctors office to have my first sonogram done. I recall the technician mumbling something about the shape of the head and calling in the doctor. The doctor looked at the screen as well and mumbled something back to the technician. The couple and I started asking if there was something wrong, to which the doctor said that he wasn't really sure but that the shape of the baby's head was not consistently round and was more lemon shaped. He then said that he would like for me to follow up with a specialist in Miami who could do a more indepth sonogram. Of course I agreed, for I wanted to find out exactly what we were dealing with here. Needless to say, the drive to Miami seemed to take forever, and I was scared.
Upon arriving at the doctors office with a full bladder, feeling very uncomfortable, it wasn't too long before we were all led into the tiny darkened office where the sonogram would be done. I watched the screen intently as the doctor pointed out the lemon shaped head more clearly, the hydrocephalus in the baby's head, along with mentioning the term Spina Bifida, which I would come to hear quite frequently in the remaining months of my pregnancy. I remember staring at the screen somewhat in disbelief as the doctor started saying all of the things that were going to be wrong with the child I was carrying. "...This baby will be paralyzed from the waist down, won't be able to walk, will probably be incontinent and have no control over her bowels, will have some form of brain damage...". I think I went kind of numb after that, as I layed there while he continued to spout off everything that could possibly be wrong. If there was an award for Worst Bedside Manner, this doctor would certainly win it. When I think back at the way he said everything to me, I am still shocked to this day. After the doctors reading, and I was cleaned up, the couple and I were led into another room where we were able to think about what we were just told. I was not prepared for what happened next. This couple who I had picked out, who had such strong christian and spiritual beliefs, turned to me one by one and said that this is not something that either one of them anticipated or could handle. My eyes were blinded by tears at this point, and my heart just pounded in my chest; for the only thing that I felt at that point was that the world had literally just dropped out from underneath my feet. If I could explain the feeling, it would be like an adoptive couple getting so close to having the child that they have been waiting for only for the birth mother to turn around and change her mind just like that. It was that painful. I remember them saying that they would pay for the abortion, but that's about all I heard as I rode in silence all the way home with tears streaming down my face. For the next two weeks, I did nothing but cry and search my heart for an answer to my dilema. I called several other adoption agencies, and met with several other families, but not one of them met my criteria for the type of parents I wanted raising this child. I searched long and hard. I even went to my pastor for guidance, to find some reason for all of this happening. After a month, I made my decision. This baby was given to me for a reason, and it was up to me to do all that I could for this baby. It was that moment in February, about 3 months before I was due that I started to do research on what Spina Bifida was. I talked to other parents with children of Spina Bifida, I read book after book about it, I got information sent to me about Spina Bifida from the Spina Bifida Association of America, I started to call around to all the public service agencies in my area to find out what type of support I would be able to get for my baby, for I knew that I would not be able to do this alone. I needed help and knew that help had to be available, it was just a matter of looking for it and getting it all set up and in place by the time my baby was born. I knew that knowledge was power, that knowledge brought one out of the darkness of the "unknowing" and into the light of understanding; that having the knowledge made things less "scarey". That having the knowledge was the power that I needed in order to get through all of the challenges that my baby and I would face in the years to come. I remember about a month before my baby was due, they had wanted to do a amniocentisis on me to find out something about her chromosomes and to see if she had the right amount, etc. I told them no, that I would not agree to that. I knew that after a certain month, that if that was done it could be harmful to the baby and possibly start a miscarriage or premature labor, and I was not about to risk that for the simple reason to satisfy some doctors curiousity. I asked him if the test that he wanted could be done once she was born, the doctor said yes, so I told him that that's what he could do then. My baby was born Ceasarean Section to prevent any further damage to the baby's head and back, which a vaginal birth would have done. On May 15, 1996, Ayla Catherine Cadwell, a beautiful 9 lbs, 15 oz. little girl, was born full term, both legs kicking and a strong healthy cry coming from her mouth. My good friend, who is a Nurse, was my coach and took pictures of the birth so that I was able to see what sized opening on her back there was. I knew that there would be and approximately where it was from all the sonograms I had and from what I had read. She was whisked away from me at that point and taken up to NICU where she would be watched carefully until her surgery. The test that the doctor so desperately wanted to do through amniocentisis was easily performed through a blood test once she was born and it came back perfectly normal. Her surgery was performed two days after her birth; and consisted of closing the back where her lesion was and implanting a shunt into her head that would drain the CSF(cerebral spinal fluid) from the ventricals of her brain down through a tube and drain into her abdominal cavity. The operations lasted about 4 hours, as I waited patiently in my bed for word that she was okay. I stayed in the hospital about 5 days, managing to walk the several hallways down to NICU to where she lay in a basinette after the surgery. Once I was released, I went to the hospital twice a day to see her. It was awhile before I was allowed to hold her, but I could put my hand through her basinette and hold her little finger and talk to her. She was having a hard time healing from the surgeries and developed a slight infection in and around where the shunt was placed, so it was scheduled that she would have that removed and another shunt would be placed on the other side of her head once the infection was gone. That was worrysome for me, for she was without a shunt in her head while her body was healing and getting rid of the infection; but the doctor was able to tap her ventricals and remove the fluid that would build up. After a week, and the infection was gone, she was ready to have the shunt implanted on the other side of her head. That surgery went well, and it was now time for recovery. The first day that I got to hold her was like holding a bundle of heaven in my arms. I had waited so long for that day. It was on July 4, 1996 that my daughter was allowed to go home. While I was anxious to get her home to be with me and her sisters, I was also a little apprehensive because in the NICU at the hospital, there was always someone there to see to what you needed, to help you with any questions that you might have. I was given all of the instructions on how to bathe her properly with her incisions steal healing, how to care for the incision areas, how to lay her down to sleep, etc. I was well prepared, but it was still a nervous time. Her other two sisters were anxious and excited to have her come home too. I thought that once we got home, doctors would stop asking questions and trying to figure out why this happened. Was I ever wrong. Shortly after we got home, we were notified by a Geneticist who wanted to do a bunch of tests on my daughter and ask a bunch of questions to find out what caused her to have Spina Bifida. I didn't agree to the tests, but agreed to go in and meet with him. He asked all the questions: Did anyone in your family have it? No they did not. Did your other children have it? No they did not. Did you get enough folic acid in your diet before you got pregnant? Yes I did. Basically, there was no simple explaination that he could find. I wasn't the one who was all bent out of shape about it, he was. All I knew was that 1 in every 1000 live births to women over the age of 35 have a higher risk of having a baby with this birth defect. It just happened. I wasn't looking for someone to blame or put blame to, to explain why my little girl has Spina Bifida, it just happened. My task now was to deal with the issues concerning her and raising a child with Spina Bifida. When Ayla was 6 months old, she was eligible for this specialized school in Broward County, Florida, called ARC. What ARC did was help infants and young children who were physically challenged to excell to their fullest potential, to become independent and help them get ready for the public school system. ARC also helped adults as well who were physically and/or mentally challenged. Ayla went there every day of the week, receiving physical therapy and occupational therapy. The social interaction with other children helped her tremendously. Just because she was limited physically as to what she could do doesn't mean that should be limited to social interaction with other children. We all need that in our lives, no matter what. ARC gave her all of what she needed and more. Ayla graduated from ARC in July of 2001, after being there for almost 5 years of her life. I am so grateful for a program such as ARC and for all that they did for her and for us as a family. During the first five years of her life, we didn't run into too many major health problems. Sure, we had the colds and the ear infections; but what young child doesn't? There were always things to watch out for and safety measures were always put into place. There were always doctors to contend with twice a year, some of which I didn't care for and some I really enjoyed. I always asked for a thorough explaination of what they were talking about and in a few cases, didn't agree and went for a second opinion. In June of 2001, Ayla was required to be straight catheterized about four times a day. So far, we have been very fortunate and that she has never gotten a UTI since we started the catheterization. Ayla is now eleven and a half years old and has proved several of the doctors wrong so far, and I'm sure that she will exceed their expectations of what she can do. It is amazing what the human spirit can achieve if given the chance. When I think back on all that has happened in the past 11 1/2 years, I have to say that it's been an adventure. Had my original plans for adoption gone through, I might never have had the opportunity to know this precious angel I call Ayla. She has made me the person that I am today. She has taught me so much and she has taught alot of other people alot too; especially my immedidate family. There is something about Ayla that draws people to her, a quality about her that touches people in their soul and tugs at their heart strings. I am truly blessed.
"Some things are true, whether you believe them or not."
- Nathanial Messenger, 'City of Angels'