Clayton's Story

Today is a day of reflections. Today is June 2, 1994, and two years ago our first child was born and our lives changed forever. The birth of our first child would have changed our lives even if everything had gone perfectly, but our beautiful baby boy was born with Tracheo Esophageal Fistula, Esophageal Atresia, and Cross-fused Ectopia (his kidneys are fused together on the left side).

Craig and I had been married for five years when we decided it was time to start our family. We were a little worried about conceiving since many of our friends had fertility problems, but we decided to cross that bridge when and if we came to it. To our delight and dismay, everything went according to plan and I conceived right according to our well thought out plan.

My pregnancy was very uneventful except I was considered borderline diabetic. I did not consume any alcohol for one year before I became pregnant and until after I discontinued nursing. I took no drugs and have never smoked. I followed my doctor's instructions to the letter, so I was a perfect candidate to deliver a normal,healthy baby.

I will never forget June 2, 1992. I was teaching in an elementary behavior disabilities class and things were going pretty well. This day was a Tuesday and on the previous Wednesday my doctor had told me I was ready to deliver. I wanted to make it to June 4th, because that was the last day of school, so I asked my doctor if there was anything I could do to help keep me from delivering. He told me to have no physical exertion and to move around as little as possible. I tried to stay immobile as much as possible, but in a behavior disabilities classroom, things can get physical. On June 2nd, my class was outside and a couple of kids started a scuffle and I jumped up from sitting on the ground and broke it up. As soon as I jumped up I looked at my classroom aide and jokingly said, " I don't think I should do that anymore!" That evening about 8:30 P.M. my water broke and my contractions started at about 9:00 P.M. When we arrived at the hospital around 10:00 P.M. I was dilated to 8cm. and I delivered at 11:20 P.M.

The delivery was easy with no complications until afterward when they began to suction the baby and found too much mucus. They brought us the baby in a blanket, told me to kiss him and they took him away. I immediately knew that there was trouble, because in our Lamaze class they told us unless there was a problem, you would be given the baby immediately. They told us they were going to run a few tests, but they were sure everything was fine. The nurse assured us that he had nonoticeable deformities, which we were very glad to hear.

I spent an hour in the delivery room after I delivered to recover. I was moved to a room and we still had no word as to what they were looking for and if anything was wrong. This finally drove Craig crazy, so he went in search of answers. He was told to go away and that they would come to tell us something soon. At about 1:00 A.M. they finally sent a resident in to tell us that they thought he had T.E.F. And that they would send him to Loyola University Medical Center the next day.

Now we were really scared. Craig and I decided he should go home to make a few phone calls and try to get some sleep. Neither one of us slept much that night. The nurse came in at about 5:00 A.M. and told me as much as she knew about T.E.F. She said it was not as serious as many birth defects and that children had a 98% chance of survival. She even sent me a textbook later in the morning to read as much as I wanted to about T.E.F.

The morning after Clayton was born is kind of a blur to me. I remember that when I finally got brave enough to call the nurse that I really wanted three things desperately; I wanted something to drink, to take a shower, and most importantly, to see my baby. I hadn't seen anything but his little face at this point, so I was very anxious. She took me to see him for about one minute because he was taken away for an x-ray. I was so scared to be a new mother and didn't know how to feel about all his problems at this point.

The ambulance and nursing crew from Loyola came around lunch time and before they took him away they explained what was in store for him that day and more importantly, they let us hold him for the first time. He was so perfect and so beautiful it was hard to believe he had any problems. I remember that Craig and I both felt we had to be strong so neither of us cried when they took him away. I think we both felt that if we started crying, we might not be able to stop.

Craig went to Loyola shortly after they took him over to be with him. At 5:00 P.M. on June 3rd they took him into surgery for his repair and Craig came back to see me at La Grange Memorial Hospital. My doctor had wanted to release me, but my blood pressure was high for the first time in my life, so he pumped me with fluids and kept me until it went down. It finally went down on June 4th and he released me. By this time, my parents had arrived and Craig had told them everything. We had not told them about the problems with Clayton until after they arrived to help eliminate some of the worry for them.

Clayton's surgery was a success, but before they took him in they found his kidney problem. The doctors and nurses had never told us he might have other problems, so this came as a total shock to us. This is what finally brought me to tears. Craig later told me that telling me was the hardest thing he had ever had to do.

Clayton stayed in the N.I.C.U. at Loyola for 14 days and we brought him home with about 2 feet of tubing hanging out of his Gastrostomy sight. Two weeks later we came back to the Outpatient Center for the first of many visits to Dr. Black and to replace the tubing with a button. Craig and I were so excited about getting the button that we celebrated that evening after we were all home.

We thought our worries were over and that Clayton would lead a normal life with no complications.

The doctors and nurses neglected to tell us or we forgot because of the amount of information we received in a short, stressful period of time that he might have problems eating when he started on solid foods.

When Clayton was about 11 months old he made some wheezing sounds and our pediatrician thought it was just congestion and put him on antibiotics. Around this same time Clayton coughed up a little fuzzy red ball he had found on a toy somewhere. He also coughed up a large button off a pair of Dockers Brand pants that he had chewed off. We didn't know that things could get stuck so we weren't concerned and laughed at how curious he was.

The week of Clayton's 1st birthday a large packet arrived at our house from Dian Noles, who is Dr. Black's nurse. It contained a wealth of information about T.E.F./VATERS. It contained information sheets, a newsletter from the national T.E.F./VATERS association, and information about a support group starting up in Illinois. I read through everything in the packet as soon as I got it and learned about food getting stuck for the first time. I knew then that the wheezing I had heard about a month earlier was not congestion, but food stuck in Clayton's esophagus.

Craig and I read through the stories in the national Newsletter and decided that the cases we read about were so much worse than ours that we wouldn't join the Illinois Group at that time.

The summer went by and Clayton was gaining weight slowly and things were getting stuck fairly frequently, but he could always cough them up or they would go down. The stress level over his weight and the episodes of food getting stuck made us rethink our decision and join the Illinois support group. This was the best decision we have ever made. It was wonderful to meet people struggling as we were and to also gain the valuable information that their experience gave us.

The first year and a half of Clayton's life went by smoothly and in October when Clayton was 16 months old we went in for a routine visit to Dr. Black and he asked how Clayton was eating and I told him things were getting stuck fairly frequently, but he was getting things past and gaining weight. Dr. Black decided that after the holidays we should come in for a Barium Swallow just to make sure the stricture was not smaller.

January 7, 1994 we scheduled the test at Loyola and much to our surprise that in doing the preliminary x-rays before the test they found that Clayton had two pennies stuck at the sight of his stricture. He didn't have the Barium Swallow, but Dian Noles came down to see us and told us he would be scheduled for an Esophagoscopy that afternoon. He had the procedure done early in the afternoon and we were home by 9:00 P.M. that evening.

We once again thought our problems were over. Clayton progressed very well after the surgery and everything seemed wonderful again.

We made it through February and March without too many problems except that Clayton had the flu twice and lost weight from the illness.

April 1994 was a month to remember. On April 11th Clayton was taken to the Emergency Room at Loyola because he had not chewed properly before he swallowed a piece of chicken and it got stuck. It was removed on April 12th and everything went well. Our troubles were only beginning though because on April 23rd we once again took him to the Emergency Room at Loyola because he had gotten a mushroom and sausage stuck after eating his favorite food, pizza. It was removed on April 24th and Dr. Black made the decision that it was time for a dilation on Clayton. On April 29th Clayton had his first dilation. Dr. Black said that it was too easy to dilate him, so he had to be offered smaller pieces until he learned to chew properly himself.

Clayton has been doing much better since April; he gained 2 pounds and grew 2 inches the first month after the dilation. He still has episodes of things getting stuck temporarily, but so far so good.

Clayton is a cheerful, active child and has been the greatest joy of our lives. We have learned a tolerance for disabled children that we never knew we could through him. The Lord has blessed us in many ways, but His greatest blessing to us was giving us Clayton.

By Maribeth, Clayton's Mom

I wrote this story almost four years ago and Clayton is now almost six years old. He has a very normal life now. He started soccer for the first time last August and also began Kindergarten right on time. He is doing great! At his first Parent/Teacher Conference we were told he could be moved into First Grade if that was our wish, but we elected to keep him with kids his own age. He has only had 2 hospitalizations since I wrote about him in 1994, he had a virus a couple of years ago and became dehydrated and he had out patient surgery to repair an undecided testicle. We now have a 5-1/2 year old boy who is learning to be independent, yet still very loving and happy. He now has a two-year-old sister, Elizabeth, whom he enjoys terrorizing! Our
story is what all the doctor's tell you about, after they turn 4 or 5 you don't seem to have anything but normal childhood problems with their health. He eats everything and is average in size. He is great and we are still very blessed to have him around.