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The other (VERY) long story
Apr. 22nd, 2008 12:09pm

I have been pondering the opinion of a few with CAH who feel parents of CAH children cannot understand certain positions and experiences of CAH patients.

I tend to disagree with this, only because I believe humans to be an animal with the ability to transfer others' experiences to their own life. Empathy and understanding allow most people to take something they themselves haven't personally experienced and apply the situation to their own life.

My daughter had a classmate who passed away from cancer this past October. When we attended his viewing, I expressed my sympathy to his mother. I stated, "I can't even imagine what you are going through."

She replied, "Yes, you can. Every parent can imagine what it would be like to lose their child. It feels just like I had pictured anyway."

I do think a great deal of knowledge comes from experience, but I don't think it is the only way to gain knowledge.

If I am wrong, and it is impossible to envision yourself in another situation with true emotions and feelings, then I think it important to tell the other long story, the story of the parents. If parents can't know how it feels to have CAH, then the other side of that statement would be true too…right?

I do have my own CAH story. A story that is unique and separate from even my precious CAH daughter. I have experiences with CAH that my daughter will never endure, although I do hope she will be able to understand and learn from my story as much as I have learned from her.

THIS IS MY STORY:

I met my husband when I was fourteen and he was thirteen. We were great students, active in sports, social with friends, and very dedicated to our churches. We both have great parents who have always been very supportive and loving.

We both believed premarital sex to be wrong, but when I was seventeen and he sixteen, we gave in to the temptation. We reasoned that we were in love and planning to marry after graduating high school and college. Apparently, we didn't take our planning far enough. I was pregnant.

Our parents were devastated and disappointed. Their babies' futures were just flushed down the drain. Members of our church couldn't even look at us, and we stopped attending. Our friends were great, but making their own plans for graduation and college made the connection seem surreal. My husband was confused. I think all sixteen year old boys are, but now he was expected to be a man!? He didn't talk to me for months.

Although I had lost my connection to the church, I still an unshakable faith in God. I would pray every night that he give me a healthy baby boy. It sounds so immature to think about now, but it made perfect sense to the seventeen year old girl I was at the time. If we had a boy, the baby would be my husband's name sake, his legacy. He would have to accept things then.

At 20 weeks of pregnancy, I got the news I had been praying for. My ultrasound picture was of a healthy baby boy! When I got to our high school from my appointment, I showed the picture to my now husband, who hollered, yelped, and ran around showing his friends, giving high fives. He was finally "IN."

We both worked full time (2^nd shift) factory jobs after school to save money for our families' future. We were still committed to attending a local college after high school, but knew it would be tough to accomplish.

My friends hosted a baby shower for our son, and the gifts of blue poured in. Our parents were proud of the fact we were still in school and working, and agreed to help finance some of our college if we did attend. Things were falling into place.

We had our baby when I was eighteen and my husband was seventeen. I had a quick and easy labor. He was by my side along with six of my girlfriends, my parents, and grandparents. Needless to say we had a full house, but everyone wanted to be the first to see the new little guy.

The nurses slapped a blue cap on his little dark haired head, and put him in my arms. We were wheeled from the birthing room to a regular room. On our way, we got to press the button for the chimes that echoed throughout the hospital. "IT'S A BOY!"

The doctor came in later to tell us of a "small, common" problem with our son's penis. We didn't care; we didn't even ask any questions. We were in awe of the new little guy who was given his father's name. Everyone snapped pictures, and my girlfriends went right to school the next day to show them off, and let everyone else know they were there to witness the birth of our son.

Adjusting at home was easier than I thought it would be. Although only eighteen, I felt as though I had been a mom forever. While rocking my baby, I would tell him stories of knights and kings, his football career, how handsome he was, and how someday he would be our nation's president.

His first doctor appointment went great. The doctor explained more about the condition with the penis, and said a minor surgery would need to be done at about one year of age. That was alright. Our son was healthy and we were in love. Nothing could have prepared me for what happened next.

My little guy didn't go very long between feedings; he woke up about every two hours, like clockwork. I was alarmed early in the AM on his ninth day of life because he had slept for about three hours. I called my Mom, and she assured me it was common. "His schedule will change a lot as he grows. Don't worry so much."

I didn't listen. Something was telling me he wasn't right. I picked him up from his bassinet, rocked him, and watched him. He was breathing normally, but he looked a little discolored. After four hours passed, I tried to feed him, but he wouldn't wake up. I noticed then he was warm. I looked at the clock, still thirty minutes until the doctor would be in his office. What should I do? I called the answering service, and the nurse instructed me to meet the doctor in the office immediately.

The doctor checked my baby over. He agreed there was a slight fever going on, and some discoloration, but couldn't find an explanation. He told me he thought it was colic or failure to thrive. He wanted us to go home and watch it, and contact him if it worsened. I had heard of each of these, and didn't see the connection, but I left the office anyway.

By time I had made the 30 mile drive home, there was a message on my answering machine. The doctor thought he might know what was going on, and needed me to take my son to the hospital immediately. By time we got back to the office, my baby was limp and very blue. His breathing was labored. I ran in the door and they whisked us to the pediatric ICU. The rest of that day was a blur.

There happened to be a pediatric endocrinologist at the hospital nearest our home. He was able to call for the labs to achieve a CAH diagnoses. He was treating our baby as such, but only giving us small doses of what they were testing for, and how they were testing it. We knew our son wasn't producing cortisone, and was being given cortisone through his IV. We were oblivious to any other information.

I had been in the hospital for 5 days without as much as seeing daylight. My son was improving, and my parents finally talked me into going home with them to take a shower and eat, while my grandparents stayed at the hospital with the baby.

I took a shower, got dressed, and was making a sandwich to eat on the way back to the hospital when the phone rang. My mom answered, listened for a moment, and then gasped. She told me to sit down. I thought my son had died.

She told me the doctors thought my son was actually a girl. WHAT? What do you mean, and how could that be? I didn't understand. Finally, I made sense enough of the chaos to know that my son had died.

The drive back to the hospital was silent. I was confused, scared, and even ashamed. No one would understand this. No one would ever think I was normal, no one would ever think my baby was normal. We would live as outcasts forever, and it was entirely my fault. How could this happen?

My mom asked if I was anxious to get back to the hospital to hug my baby. I think she was feeling me out to see if I could accept this. I wasn't sure. The baby that was there was not the baby I had left. I left a boy, named after his father, our family's first child. I was returning to a girl!

My husband's parents were going to get my husband from work. I knew he wouldn't come. If I was having trouble making sense of this, how could he? He didn't have my motherly instinct, and he wanted a son so badly. If I was feeling betrayed by this girl who had taken my son, how could he ever accept her?

My legs felt like lead as I made my up the elevator and down the hall to my baby's room. Stepping off the elevator, I heard my now husband say my name. I fell into his arms sobbing, he had come! He whispered, "That is our baby and it needs us."

We walked together in the room, and all of the negativity I had felt since receiving the news was washed away. I picked up my baby, and smelled the little body I had been cradling for the last two weeks. I was home.

As embarrassed as I am to say it now, we referred to our daughter as "it" for several days. Our brains were slow to understand we had a daughter now instead of a son. We waited for every test to come back conclusively before we were able to think about changing her name and our future plans.

I think it is impossible to put into words the pain you feel when people who do not understand the condition are snickering and talking behind your back. You feel the pain not for yourself, but for the child you want to protect from this in the future. Our friends and relatives asked a lot of questions. Some seemed to understand and some didn't. Neighbors were confused when we had a daughter, after the blue stork reading, "It's a Boy!" was so proudly displayed for a week. The confusion wasn't close to an end; it was only beginning.
The next phase of the news comes in the form of being rushed with information. Not only did we need to understand the dire need of a daily medicine regime, but we were being told our child would need to have surgery to "correct" the masculization of her genitals. At first we didn't question the necessity. Of course it would need to be done. Our daughter looked like a boy!

Luckily we had great doctors, who probably felt a special burden working with teenage parents, who encouraged us to research the proposed procedures before committing to anything. I was not prepared for the controversy I walked into. I expected research to mean finding exactly what was being done, recovery time, special care, stress dosing information and so on. I had no idea research meant deciding IF the surgery should be done.

For the next several months I was consumed by figuring out what was best for my daughter. I read, made phone calls, set up appointments with doctors, and even CAH adult women. I surfed the web, read articles, and cried A LOT. There didn't seem to be a "good" answer. What was worse, I felt like an outsider from both ends of the spectrum.

The CAH community was at a point of "bad press." Several stories had been printed or run on T.V., which focused on the masculization of female infants, and seemingly ignored the more important facts of the condition. Parents dealing with this "side effect" of CAH were in the minority and other parents didn't want their own child's condition to be confused or clouded by what only some families were experiencing. I did understand their viewpoint, and probably would have felt the same way. Being in my shoes, however, felt lonely.

On the other side of the coin the medical community didn't understand my resistance to the proposed procedures. Had I done the research? Why couldn't I see this would be in my daughter's best interest? Did I understand the procedures were different than those of the women I was speaking with? I don't know if there is a worse feeling in the world of being accused directly or indirectly of not having your child's best interest at heart.

We finally decided we couldn't decide. We needed more information, time, or something to just make sense to us. We didn't care what our daughter looked like, we loved her just the way she was. When she was seven months old, our daughter had a urinary tract infection, which caused her to go into an adrenal crisis. A couple of weeks later, she had another and another. We finally got the answer we had been waiting for.

We went to see Dr. Rink about our daughter's repeated infections. He explained her infections were a result of the masculization, which had taken place in the womb. He described in much detail, and even with illustrations, the procedures he could do to correct the problem with her infections, and asked if we were interested in the cosmic surgery to make her appearance more "feminine." We shared our concerns and hopes for her future, and for the first time we felt as though someone understood us. He took the time to talk with us, and I never saw even the smallest glint of judgment in his eye. I asked, "Would you do this if this was your daughter?"

He replied, "Yes."

Our daughter had her surgery with Dr. Rink when she was nine months old. Despite all of my fears, apprehension, and tears before my meeting with Dr. Rink, I never doubted the choice we made was the right one for her afterward.

In the midst of the anguish of deciding for or against surgery, we had to deal with our fair share of learning curves dealing with the most important of CAH; keeping our daughter healthy. Dosing medicine at the best times, being up all night with a fussy baby, dealing with slow to no growth, driving all over the country to find doctors to listen to our concerns, not sleeping for days at a time if she had the flu, frequent hospital admissions, and still being able to find time to enjoy her. The worry itself is enough to drive some people crazy. We just put our faith in God. We had made it this far, right?

Our daughter is now a very pretty and active eleven year old girl. She has a great sense of humor, and really likes to challenge her father and myself whenever she thinks she can get away with it. She is learning about herself and her condition one day at a time. I made a deal with her, if she asks the question, I will ALWAYS tell her the whole truth, and she will do the same. This has worked well so far, although there are some questions I wish I never asked. : )
I think communication is the key to all relationships, and she may need it a bit more than your average eleven year old girl.

Obviously, my husband and I did eventually marry. We also made our goal of graduating from college. We have faith we were given the challenges in our lives for a reason. We hope we can teach our daughter, she too is better because she has been given a gift, the gift of CAH.

I hope against hope that I am right about humans being able to feel emotion from someone else's experience. I would like for someone else, anyone else, to be able to have some sort of gain from what I have been through. It would make it all worth it then.

God Bless!