The result in the test window showed a pink line before I had a chance to hold my breath,   "Pregnant again?"  We already had a nine month old.  Following at least thirty seconds of contemplation, I emerged from the restroom wondering how I would inform my husband of this wonderful news.  I didn't need to utter a word, as the look on my face told the story.  Ken wrapped his arms around me and held me tight.  A tender celebration followed and needless to say, we were both elated.       

Employed as a flight attendant for eight years, I had to leave town for the next three days, my obstretrician visit would have to wait.  During my trip, I had a little spotting and substantial cramping;  while making a stop in Los Angeles, I called in sick and flew to my mother's home in Seattle.

The trip to the emergency room proved extremely disheartening; convinced of spontaneous abortion, the physician prescribed a strong pain-killer. I asked what effect the medication would have on the baby and the response was, it would surely speed along what they felt my body had already begun.  Completely overwhelmed by this diagnosis, I could no longer hold back the tears.  My mother and I sat for what seemed an eternity, neither of us uttering a word.  Finally, I collected myself and made my way toward the door.  My mother grabbed me by the arm and looked me in the eye, her painful frown slowly turned into a smile.  She wrapped her hands around mine and we crumpled the prescription and threw it into the garbage can.  At that moment, I realized I could handle the pain and felt I should leave the fate of the pregnancy and my child in the hands of a higher power. 

Following a day of rest, I returned home to Chicago. After much research, I located a highly respected obstetrician that specialized in high risk pregnancies. I watched intently as the doctor performed the ultrasound.  After what seemed an eternity, he finally stated, "The pregnancy appears normal." What a wonderful sentence.

Because we were considered high risk, we were given the luxury of having multiple ultrasounds during the pregnancy.  Four chambers in the heart, a normal spinal cord, two arms, two legs and finally, "the stem of the apple."  We were having a boy.

The scheduled Cesarean Section took place at thirty-eight weeks and our beautiful boy weighed a healthy 7lb 10oz. What an incredible blessing. Unfortunately, it soon became apparent that something was terribly wrong.

Kenny had absolutely no interest in eating and what little we could get him to swallow was regurgitated within minutes. He seemed as if he was in a lot of pain and there was much concern that no meconium had passed. His color began to turn ashy and the amount of abdominal distention was quite alarming.

One of the nurses brought us the news, the symptoms Kenny exhibited went hand in hand with a disorder known as Hirschsprung's Disease and the doctor's felt Kenny should be transported to a hospital forty miles away for further testing.

Within the hour, the transport team arrived, two EMT's, a neonatal nurse and a neonatologist; all this for my little boy. When he was brought into my room, he was in a plastic incubator on wheels, oxygen was attached to his face and two IV's had been started, I couldn't even touch him.

With much coercion, my husband agreed to follow the ambulance.  I lay alone in my room with both hands on my now deflated stomach; I never felt so empty and so alone.  The following morning, I announced I was leaving the hospital, against medical advice.  The staff was incredibly slow in retrieving the required wheelchair and paperwork.  As the minutes crept by, I lost what little composure I had left and began to sob.  Without hesitation, my husband picked me up and carried me out to the car.     

When we finally arrived at the Neonatal Intensive Care Unit, (NICU) I was introduced to the strict regimen one must follow prior to entering the ward. I felt as if I were, "scrubbing in" to perform surgery. Nothing could have prepared me for what I was about to experience. The large room housed eight incubators, each holding a little life. All the machines, the tubes, the beeping sounds, alarms constantly going off. Perhaps most disturbing, was the "numb" look on the faces of the other parents. The same look I surely wore and would have noticed, had there been a mirror present. If I had severed a limb at that moment, I wouldn't have felt the pain. The nurse assigned to Kenny asked me if I wanted to hold him, of course I did, but I felt absolutely terrified. There was a tube down his throat, an IV piercing the vein in his forehead, his hand and his foot, leads on his chest that monitored his heart and an oxygen tube taped to his face.  It seemed an awful lot to grasp, but with a lot of wire re-arranging, I finally held him in my arms.  I sat there for hours, sobbing as I never had before.

In addition to suspecting Hirschsprung's Disease, the doctor's also wanted to rule out Cystic Fibrosis. I knew a little about CF, but had never heard of Hirschsprung's Disease. Hirschsprung's affects approximately one out of five-thousand births; the ratio: 3:1, in "favor" of males. Persons with Hirschsprung's Disease are missing ganglion cells within the wall of their intestine.  Ganglion cells are responsible for the wavelike motion that occurs in the intestines and rectum; this wavelike motion pushes stool through and eventually out.  Kenny was several days old and still hadn't experienced the "luxury" of a bowel movement. Rectal irrigations were done several times a day, this was the only option to rid his body of waste and it was the only way we could keep him alive. He was unable to eat and relied solely on what's called a central line for his nutrition, time was quickly running out.

Meanwhile, life at home continued and I attempted to act as normal as possible for the sake of my daughter.  The drive to the hospital was eighty miles round-trip and I relied a lot on family to care for Carly.  The sometimes twice daily trip to see Kenny gave me the opportunity to daydream of a time when I would have my little boy home, a time when I could simply walk into his room, pick him up and hold him. That time seemed so far away . . .

The only test for Hirschsprung's Disease is to biopsy the rectum and rule-out the presence of ganglion cells. If no cells are present, you have your diagnosis. When I received the positive results, I actually felt relieved, as Hirschsprung's patients are able to benefit greatly from surgery.  Ninety-percent of the time.    

Once diagnosed, often the severity of the disease can be determined with a series of barium X-rays. The point of the intestine that is affected may appear restricted. In Kenny's case, both the large and small intestines appeared restricted. I didn't realize the meaning behind this until I consulted with the pediatric surgeon that would operate on Kenny.

He opened our first meeting with the following statement:  "If Kenny has what I think he has, it's not compatible with life." He finished the meeting with a hug.

Kenny was only ten days old and although it was painful, we made the decision to have him baptized prior to surgery.  The other parents in the room tried not to stare at our family as we held each other and gathered around our baby.  There are very few moments in life that you know will affect you forever.  I couldn't help  but feel we were saying good-bye.

The surgery proved to be a lengthy process. At various points of the intestine, a biopsy was required to see if ganglion cells were present and the result of each biopsy took at least twenty minutes to come back.  We understood the longer the surgery lasted, the further up the intestines they had to go. Three hours  passed and the nurse finally walked into the waiting room. The look on her face frightened me and she quietly requested to speak to me alone, asking my mother to please leave.

She simply stated: "It is the entire large intestine, and a portion of the small intestine as well."

I swallowed hard and paused for a moment.  Taking a deep breath, I asked, "Can he live like this?"

She said, "Yes, but . . . "

I smiled and began to cheer, "He's going to make it!" Our entire family took a collective breath and started hugging.

The nurse took me by the shoulder and said, "I don't think you understand, it is his ENTIRE colon!"

I countered, "No, you don't understand. You just told me my son is going to LIVE!" 

My prayers had been answered.

Kenny remained in the NICU for another ten days, as he had lost over a quarter of his birth weight and the doctors wanted him to gain a few pounds before allowing him to go home.  This seemed the perfect opportunity for me to learn how to care for an infant with an ileostomy. An ileostomy is similar to a colostomy, however, instead of the large intestine protruding from the abdomen, it is the small intestine.  To explain it in simple terms, Kenny stooled from an opening on the side of his stomach.  The bag was difficult to apply and keeping it secure proved to be a monumental task.   

As with most things we daydream about, the reality of bringing Kenny home was not at all as I had imagined. There was no parade and the mayor did not stop by for coffee cake. I simply placed my sleeping boy in his crib, the safe place that had waited to hold him for nearly nine months.

The next eight weeks was filled with a combination of much happiness and a lot of frustration. I had mastered the technique of getting the bag to stay securely... while in the hospital, as long as a nurse supervised. Doing it alone, at home, with a squiggly two month old was another story. Not to mention having a curious twenty month old poking and prodding. With everything I tried, nothing seemed to work.

The importance of keeping the bag secure had been fully explained to me. I knew if it leaked, there was a good chance that the skin around the stoma would become infected and break down. Once infection occured, the surrounding skin would weep and it would be impossible for the bag to stay on.

I felt I was admitting failure when I finally made the call. The volunteer on the other end of the line had spoken to people like me a hundred times before, people who didn't know how to ask for help. Peggy had experienced similar circumstances and came to my home the very next day. Her solutions were simple and did not appear in any medical book. More important, her solutions worked.

Kenny was three months old when we were told it was time to start considering reconstructive surgery. He had astounded the doctors with his rapid weight gain and they felt he was ready to start over. I felt absolutely elated with this news, no more bag! My son was finally going to be "normal".  Kenny came through the surgery with flying colors and now all I had to do was wait for a bowel movement. Kenny finally "performed". That was the first (and last) time I had tears of joy over a soiled diaper.

The year that followed proved to be full of a lot of ups and downs and I quickly began to regret rushing into the reconstructive surgery.  Everything Kenny ate and drank came out the other end within minutes and he was not gaining any weight at all; in fact he was quite thin and sickly looking. He soon began to show signs of severe malnutrition and vitamin deficiency, as most days, he would have up to thirty loose bowel movements. The diaper rash he developed was horrible and maintaining his health and bottom was a full-time job. Since Kenny did not have a large intestine, the stomach acid had no opportunity to be absorbed prior to elimination and his stool seemed to burn within seconds of contacting his skin. The bloody sores that developed were excruciatingly painful and impossible to heal. 

We were referred to many specialists: Gastrointerologists, nutritionists, dermatologists, etc. We learned how much diet could play a role in making his condition a little more manageable and the final answer was even more simple than that. A physician who specialized in pediatric surgery suggested  Kenny ingest an anti-diarrheal medicine twice daily. Surprisingly, that was a huge turning point in his life.  He steadily began to gain weight and within several months, we began to realize what "normal" was all about.  Our normal.     

Shortly after Kenny's first birthday, we made a visit that was long overdue; a visit to The Evanston Hospital Neonatal Intensive Care Unit.  I needed to properly thank the other heroes of Kenny's story, the doctors and nurses that loved and cared for our boy as if he was their own.  There wasn't a dry eye in the ward when Kenny walked in.  He hugged these "strangers" as if he had known them his entire life. Perhaps he did remember, I know I will never forget what they did for us. 

Today, Kenny is the epitome of other children his age.  He doesn't take the time to notice the physical scars he has on his abdomen.  I suppose someday he will ask and perhaps I will let him read this story.

Of course everything happens for a reason and I will give you my standard answer; I am and will always be thankful that Kenny was given to me. He has shown me the true meaning of life, love and the giving of one's self to make someone else's life a little better.  I shall never again ask for anything in prayer, for I realize that everything I need in my life, I see in the faces of my children.

I still to this day look for angel's wings on Kenny's shoulders. I have yet to find them.
I guess I may have to settle for that special smile on his face and the gleam in his eye.