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Kevin Christopher

 

Kevin, baby with anencephaly

Even though my story starts many years ago, it sometimes seems like it was just yesterday. As they say, time heals the wound, but the scar remains. With this, it was love that stayed.

I married young. I so wanted a family of my own since I came from a somewhat fractured family, my father dying when I was eight years old. My husband and I decided to start a family about five months after we married, and I found out I was pregnant shortly before our first anniversary.

Home pregnancy tests had just become available about that time in 1978, and it was like a small chemistry set. A test tube, eye dropper, and solution were all in the kit. You had to mix the components, sit the test tube in a little holder that had a mirror below it. It took two hours to get the results. We were ecstatic seeing the positive results, which was a ring at the bottom of the test tube, seen in the mirror. I immediately made an appointment with an obstetrician who confirmed I was about 5-6 weeks pregnant.

The pregnancy progressed normally. Ultrasounds were very far from normal routine at that time. In the small church my husband and I attended, there were four women pregnant. One of them was a very good friend. I often called her because I had very vivid dreams about something being wrong with my baby. She said she didnít have any dreams like that and that she had even talked with her mother who felt it was first time pregnancy jitters so to speak. So, I tried to put them out of my mind and proceeded with making a nursery. But there were two recurring dreams. One dream was where my baby was born, then immediately taken away. The other had me walking down the hospital hallway, looking into the nursery. There were all the little babies, except mine. It was a small child sitting in its hospital bassinet. I keep feeling God was trying to tell me this baby wouldnít be mine to rear. But it was easy to put the thoughts away with the excitement of being pregnant.

My due date came and went. My doctor felt I must have miscalculated. I had only gained eleven pounds up to this point. And before long, I was six weeks past my due date, and I had gained another eleven pounds. At that time, my doctor sent me to have an ultrasound at the hospital. Now, this was February of 1979, and the ultrasound machine occupied a room about twenty feet by ten feet. Everything looked good from the ultrasound; the baby was in position for birth. The doctor later told me that the babyís head was so for down in the pelvis, his condition was not seen. My doctor did some things to hopefully start labor and sent me home.

The next morning, I was in labor. It was also my little sisterís eighth birthday so how excited she would be to have a niece or nephew born on her birthday. My husband was looking forward to having a reason to run a red light on the way to the hospital 30 miles away. But instead, I went to see my doctor. After examining me, he told me I had a long way to go and to go shopping or something. I went to my motherís house which was only about 12 miles from the hospital. She was a nurse and monitored my progress. After about two hours, she sent me to the hospital.

My doctor checked me and since my water hadnít broken, he broke it. He came in about an hour later to reexamine me and I had dilated enough that he could feel the baby. But he looked puzzled, yet didnít say anything. He sent me to have an X-ray. Now, I was having contractions every forty-five seconds, lasting fifteen to twenty seconds. Lying on an X-ray table was an experience, and trying to be still was very difficult. I was sent back to the labor room after getting a good picture. Now, this was a small rural hospital with a labor room that held two women with a curtain in between. I was the second women in the room so everybody that came to see me had to pass by the first women. The hospital basically allowed one person at a time to be with the mother in labor.

Kevin, baby with anencephaly

Shortly after being returned to the labor room, my doctor came to see me. My mother was there while my husband took a break, and we were talking while half listening to the doctor. But then I realized I heard words coming from my doctorís mouth telling me my baby wouldnít survive delivery. And if the baby did survive delivery, he or she would only live a few hours. I looked up at my doctor who had tears in his eyes. He had my full attention now as he explained further about the babyís condition. He gave me no hope for a future with my baby.

My labor continued to progress. My doctor gave orders that anybody I wanted to see could come into the labor room to see me. We had called our pastor when I went into labor, and he had arrived just in time to be with my husband when the doctor gave him the news. Then he came to see me.

Nurses came to check on me. One brought a monitor to check the babyís heartbeat and could no longer pick it up. After several attempts, it wasnít tried again. In my mind, the baby had already died. I screamed, I cried. I was told later, the doctor left orders to allow me to vent any way I wanted. Now remember, on the other side of the curtain was this woman in labor, playing a music box as part of her Lamaze training. I still think about her. Everybody that came to see me had to go past her.

I had been in the hospital about 3 hours when I was wheeled to the delivery room. Even though I initially wanted no nerve block, I asked for one to avoid feeling the pain of delivery. Back then, it was the only thing offered and it was administered right before birth. My doctor told me he couldnít. Because of the condition of the head, he wouldnít be able to use forceps that were required after a nerve block. He told me I had to push the baby out. It turned into an ordeal because the babyís shoulders were much bigger than expected. But soon, the doctor delivered him, wrapped him up in a blanket, and placed him on a table nearby. My doctor didnít check for life.

As the doctor was tending to me, the blanket started moving as you heard the baby gasp for air. At this time, I am still calling it the baby because I had already tried so hard to distance myself from the pain of losing my child. My doctor immediately had them contact the physician I had requested for the baby. In a matter of minutes, a doctor came running into the delivery room, throwing on a green surgical gown. He lifted the blanket, looked at the baby, and then came over to comfort me. Again, nothing was done for the baby.

Kevin, baby with anencephaly

I was taken back to my room. The babyís doctor told me he had never seen a baby born with this condition but that the pediatrician who did have some experience with this recommended I not see the baby because it could cause nightmares. I was twenty years old and and respected what the doctor told me. The babyís doctor also told me he was going out of town for the weekend on a trip that had been planned. The baby would be under the care of yet another pediatrician. The only thing I knew about this pediatrician was that he was from Cuba. Before the birth day was out, I went in for repair surgery due to developing a hematoma.

The next morning, the new pediatrician came to see me. He told me he had never seen a baby in this condition except in medical books. He stated he had done research far into the night and wanted me to know that I did nothing to cause the condition of the baby. That it was something set in motion even before I knew I was pregnant. We didnít discuss the baby further except that I was told he was being kept in the back of the nursery in an incubator.

That afternoon, the pediatrician came back to see me. He told me he had just checked on my son and ordered that the baby start being fed. He stated the baby was trying to suck his thumb and that told him the baby was hungry and knew it. Me. I didnít know there were orders not to feed him. But I learned later that no means of supporting life were used with these babies. They were considered incompatible with life. I now think back, grateful the first doctor left for the weekend.

The next morning, Sunday, now about thirty-six hours after delivery, a nurse aide came in to take my vital signs. She asked me which baby was mine. Tears started in my eyes as I told her mine was the one in the back of the nursery. She told me how beautiful he was. I couldnít understand how she could say that with what the doctors were telling me. But I wanted to see him desperately.

My husband wasnít sure about seeing him. We struggled with the decision all day. Finally, a wonderful nurse talked to us. She gave us the run down and told us about one of her children being born with hydrocephalus. We decided to see the baby. The nurse used stockinet placed under casts, rubbber banded one end , turned it inside and made cap for the baby. She brought the baby to us in my room. He looked perfect to us. He was our Kevin Christopher.

The next morning, Monday, Kevinís doctor returned from his trip. I donít believe he was happy to find the baby still alive. And he was upset that the baby was brought to my room. He told me if I wanted to see the baby again, I would have to go to the nursery and put on a surgical gown to see him. Of course, that didnít stop me. I spent as much time as they would allow with him. One thing that surprised his nurse was when I stepped into the back of the nursery and spoke, Kevin immediately started trying to turn his head in my direction. Babies were laid on their stomachs back then and he would try to pick his head up and move it toward me which making a cooing sound. We all realized he recognized my voice. I would feed him with a preemie nipple from a bottle. When he tired, I fed him with an eye dropper.

Kevin, baby with anencephaly

On Tuesday, my sister in law left the hospital with her newborn son. It was my brotherís and his wifeís first son who was born less than 24 hours after Kevin. I was in no hurry to leave the hospital. But on Wednesday, I was told I was going home, five days after Kevinís delivery. I didnít want to go. How would I get back every day from thirty miles away? My doctor told me I needed to rest because I was still very weak. Oh yes, I told Kevinís doctor I wanted to see his head before I left. He took me to the nursery, lifted the cap so I could see the full extent of the birth defect. I was okay.

I left the hospital. What a sad trip. I remember as if it was yesterday. I went to the hospital just five days before thinking I would be carrying a baby home with me. I remember the empty arms as we drove by a school with children playing. The tears fell for all I would miss with my son.

So Thursday, as soon as my husband got off work, we headed back to the hospital. We took pictures, held and fed Kevin, and enjoyed our time with him. We went back on Friday, but then my husbandís shift at work changed, and I was unable to go on Saturday.

When I went Sunday, I became so upset. Kevin was in his incubator and had blankets on top of him. I saw the temperature in the incubator and it was ninety six degrees. Kevin had a rash on his legs from his urine. I was so upset. The regular nursery nurse who took special care with Kevin had been off that weekend. My mother, who worked the night shift in another part of the hospital and spent her breaks with Kevin, had been off that weekend. The nursery nurse that was there during the time I was there was very nice, but had a nursery full of healthy babies with little time to have one on one time to feed Kevin and see after his needs.

Monday, I made an appointment with Kevinís doctor. I told him I wanted to take him home. He gave me all the reasons why that was a bad idea including the fact that Kevin had been in an incubator since he was born, that he couldnít control his body temperature, and would die that night if removed from the hospital. I looked at the doctor and told him that if that was the case, Kevin would die at home with me. The doctor thought I was being irrational. I honestly believe he wanted to call in a psychiatrist for me. But seeing that I was adamant about my decision, he finally signed the discharge papers at the hospital, then immediately left after telling me to call his office and make an appointment for him to see Kevin in one week.

We prepared for our trip home. Car seats were not required back then, so I held Kevin all the way home. What a wonderful feeling. For as long as God allowed me to take care of him, I would do the best I could. I did have fears though. I wasnít prepared to find him dead even though I knew I was taking that chance. My most fervent prayer was that God would not allow me to find his lifeless body.

When we got Kevin home, we did everything most new parents would do. Except, I set an alarm clock at night so I could get up to feed him. He didnít make much noise, so I needed to sense his needs. We had a wind up little stuffed bear I had bought for the nursery. Kevin slept in a little bassinet size crib that had been in his dadís family for many years right beside my side of the bed. We would wind the bear up and place it in the crib with him. When the music stopped, he would let us know his displeasure until we wound the bear up again. It wasnít a normal cry, it was weak, but very much his way of letting us know he wasnít content. I only heard him really cry out once. And it was short and loud and gave his dad and me such joy. We were on our way home from church where he had heard another baby start crying.

Yes, we took him to church. Our church had prayer chains going for him from the time they found out something was wrong with him while I was in labor. If people were judged by the impact they made on other people, Kevin lived a fulfilled life.

Otherwise, again, we did what most new parents did. We went grocery shopping and went out to eat at a restaurant. I remember one waitress admiring him, her only comment being that she had such a hard time keeping a cap on her son because he would pull it off. All anybody saw was a perfect little quiet baby.

Kevin rarely opened his eyes. But during his bath, he would open them. I donít know if he could see but he knew something different was happening!

Every day that went by, we felt blessed. My husbandís sister was living with us at the time to give me extra help. Kevin received so much love each day not to mention the love and joy he gave back to us.

We brought him home on Monday, and on the following Sunday, both sets of grandparents showed up unexpectedly. It was wonderful to see them spend time with Kevin. I remember placing Kevin into the arms of my six foot, seven inch step dad. He cradled Kevin in his arms with such love. My father in law seemed so upset that I tried to put it in perspective for him. I told him that we knew Kevin would have a short life, but none of us knew how long our life would be. That he could outlive someone in that very room that day.

On Monday, Kevin made his one week appointment with his doctor. Needless to say, the doctor was more than surprised. Kevin had gained 6 ounces and his body temperature was normal. But the doctor checked his liver and said it was getting enlarged again. This would be his second bout of that, the first time happening in the hospital. The doctor advised me to put him back in the hospital because he wouldnít live another week. I again told the doctor that he would die at home.

On Wednesday, my husband was working the night shift. I felt the need to go find a gown for Kevin to be buried in. I left Kevin with my husbandís sister, telling her exactly where I would be going. As I was leaving the store, I saw my husbandís little red truck come barreling into the parking lot. My heart dropped. My husband let me know that my mother had called. My step dad had died of a massive heart attack that morning. I knew God would take care of Kevin, and my husband and I left from the parking lot for my motherís house to be with her and my little eight year old sister. There was so much calling to be done. I started doing that. When relatives heard my voice, they immediately thought of Kevin, but then they knew that if he had died, I wouldnít be doing the calling.

Kevin, baby with anencephaly

Within a few hours, my sister in law brought Kevin to me. My motherís house was filling with people as the word spread. I was prepared to just stay with Kevin at my motherís house to help with arrangements.

Thursday morning, I picked Kevin up out of his crib, laid down with him, placing him on my chest and zipping him into my robe as I did every morning. I know some people donít believe in hearing a voice from a representative of God, but I was told that today would be Kevinís day to go home for good. I had heard the voice once before in my life, and I knew from where it came. I accepted what I had heard but continued to help my mother prepare for the funeral. I left Kevin with the ones who were helping at my motherís house when I went with her to the funeral home to make arrangements for my step dad. I told them, he had just been fed, and he shouldnít need anything till I got back. I let them know they didnít have to pick him up or anything if they felt uncomfortable in any way. They all looked at me like I was crazy. More than one told me that they felt a powerful calmness come over them when they held him.

That afternoon, my pastor and his wife had just left motherís house. I had just fed Kevin, and left him for a nap. I walked toward the den where many people were gathered. I suddenly stopped; I was told a strange look came over my face and that I muttered something about needing to go. I heard the voice again telling me it was time. I went back to Kevin. I watched his life on earth slip away. I grabbed the stethoscope my mother had bought me, and I listened to be sure. He had breathed his last breath on earth and was now in Godís loving arms where he belonged. My prayer had been answered. I was with him as he died. It was peaceful.

The following was written by a very sweet lady in our church for the newsletter;

Öand the Lord sent an angelĒ: on February 23, 1979, Kevin Christopher Tyler was born to Ken and Carolyn Tyler. Kevin blessed us, taught us, and strengthened us and let us love him until March 15, when his mission here on earth was finished and he went to the Father from whence he came.

Epilogue

My doctor said I could start trying to get pregnant when I wanted. After a year of no success, we put in our application for adoption. In May of 1981, we adopted a three year old little boy. In September of 1983, I gave birth to a healthy little boy. I still had the same obstetrician who got so excited at his birth, nobody remembered to look at the time he was born. He estimated while continually remarking; ďWe have you a healthy oneĒ. In December of 1985, I miscarried at three months. All my friends who had had miscarriages told me after what I had been through, this would be much easier. I went back months later and told them no, it wasnít. I felt suspended in midair. You see, Kevin was born, he breathed, he was loved so very much, and he gave love. His life was short, but it was a fulfilled life.

 

Last updated March 20, 2012