I would like to share with you a story of the life of our daughter Abigail Renee Wheat. Throughout our marriage, my wife and I had discussed several times the idea of having children. In September of 2001, we decided that we were ready to try to start a family. On February 28th 2002, after several pregnancy tests, we discovered that we were expecting our first baby. Katie, my wife, called our Nurse Midwife to let her know of the results. She asked Katie if she wanted to come in and get her blood drawn to verify the results. Katie and Jessie (her mother) went to the hospital that evening to have her blood drawn at the lab. The nurse midwife called her back within an hour, at 10:30pm, to let her know that the results were positive. That was the most incredible feeling of elation and joy.
We were both so excited about the results that we began immediately looking for baby names and bedroom items. We must have spent hours on end at Babies ‘R Us. We had no problem deciding on a boy’s name. The girl’s name, however, was a completely different story. Finally, one night Katie was just rattling names off of the top of her head (or out of a book, I’m not quite sure). She happened to say the name Abigail. It seemed to strike a chord, so that was it. We had decided. We had both always liked the name Renee, and it seemed a natural fit for a middle name. That first couple of months was the happiest of our lives. We bought one of those “home use” ultrasound listening devices and used it nearly every night on the off chance that we might hear heart tones at home.
At 16 weeks, during Katie’s routine monthly check-up, the Nurse Midwife drew blood for an AFP (alpha-fetoprotein) test. This was explained as just “one of those routine tests” that everyone has drawn. We did not think much of it at the time. About a week later, in May of 2002, Katie received a phone call from our Nurse Midwife. The AFP results had come back abnormally. The results indicated an increased risk for Trisomy 18, also known as Edward’s syndrome. I was at work that night, so Katie immediately called her mother, Jessie. After calling me at work to tell me the results, and telling me where she was going, she left to meet her mother. They met at the hospital where Jessie works as a maternal-child nurse. They perused some of the maternity books available on the floor at the hospital only to find very grim statistics. Approximately 90% of babies with Full Trisomy 18 die before birth. Of those that are born alive, only 50% will live for one month, with only 10% surviving for a full year.
I began my own search to find out about Trisomy 18. I was working as a nurse on the orthopedic floor of the hospital. That night happened to be very quiet, so I took an early lunch and hit the computers. I found article after article relating to Trisomy 18. Unfortunately, everything I found was written (and rightly so, considering that I work in a hospital) for medical professionals, not expectant parents. With each new article, and each identical set of statistics, I grew more frantic and uncertain.
We were referred to a perinatologist for a level 3 ultrasound. Another bit of information we had found, and would find over the next few days, is that there are certain physical characteristics that are extremely common with Edward’s syndrome. Some of these included physical cardiac (heart) abnormalities, club feet, and clenched fists with overlapping fingers. It was expected that these would be visible on this extremely detailed ultrasound to help either confirm or dispute the AFP test results. We contacted the perinatal center to set up an appointment and were told that the first available appointment was one week later. That was an incredibly long seven days.
During the course of the ultrasound, in early June, 2002, the ultrasound technologist was unable to obtain the views he was looking for of our child’s heart. We were told that our first child would be a daughter. None of the other physical characteristics were visible, but we were told that the cardiac abnormalities were the most common. Because we were unable to visualize the heart the way the doctor wanted, we were offered the choice of rescheduling a month later, when the child would be larger, or doing an amniocentesis at the office that day.
The genetic counselor told us that if we wanted to terminate the pregnancy, we needed to find out as soon as possible. Having discussed this with Katie prior to this appointment, we had decided that abortion was not an option. At the time, we chose not to do the amniocentesis because none of the other physical signs were seen. We were rescheduled for another level 3 ultrasound one month later.
That month between visits seemed to last nearly a lifetime. During that time, Katie and I, along with both her mother and mine, did quite a bit more research about Edward’s syndrome. By the time the day arrived for our follow-up ultrasound, Katie and I had convinced ourselves that the AFP results must have been inaccurate. The physical distinctions were so common that we were sure our daughter must have been all right.
During that second ultrasound, we were seen by a different ultrasound technologist. Very little was said throughout the process. While I am a critical care nurse, I do not read ultrasounds, so I was just as in the dark as Katie. The ultrasound tech. left to get the doctor because she said that she was again having difficulties obtaining the desired views. When we asked if there were any visible problems, we were told that if there were, they would have told us.
Shortly thereafter, the doctor and ultrasound tech. returned. The doctor watched while the tech. again tried to find the proper views. Several measurements were made on the screen, but no information was given to us during this process. The doctor finally informed us that there were some physical signs present of trisomy 18. Abigail, our daughter, had a large ventricular-septal defect (VSD), pulmonary artery defect (PAD), and was a week and a half behind her expected size. A ventricular-septal defect is a hole in the wall between the two bottom chambers of the heart. The pulmonary artery defect was a hardening a loss of elasticity of the pulmonary artery – the blood vessel that carries blood from the heart to be oxygenated in the lungs. We knew from our research that these are all characteristic of trisomy 18.
We decided to go ahead at this time with the amniocentesis to verify the diagnosis. We knew that a confirmed trisomy 18 diagnosis would not affect our actions, but we needed to know what to expect. The procedure went without complication, and we were told that we should have results in 7 to 10 days.
I had no idea that ten days could last so long. We called the perinatal center twice during that time to find out if they had received the results yet. We knew that, no matter what happened, God would take care of us. Even with this knowledge, and our faith, we still spent most of those nights filled with tears, and lacking in sleep.
On July 8, 2002, we received the news that we had been dreading. Abigail Renee, our first child, did have Edward’s syndrome. Our first thought was, “Why?” We could not understand how this could happen to us. We had wanted this child so badly. Katie had taken great care of herself during the entire time of our pregnancy. She stopped drinking caffeine, started eating healthier, and never missed her prenatal vitamins. We just couldn’t understand what had happened. To this day, we do not, and probably never will, have those answers. The simple fact, looking back, is that it happened. There is never an answer to “why?”
We spent the next couple of weeks in a daze. We had to tell all of our family and friends the news. All of my friends that I had just graduated with in June had thrown us a baby shower. We had to tell them as well. We also called our Nurse Midwife, Peggy, to let her know that we had found out. She was very supportive of our decisions throughout this process, and was always there when we needed her.
We also returned to the internet looking for more information about what to expect. During the course of this search, we found the website SOFT (Support Organization for Trisomy 13, 18 and related disorders). We also stumbled across Trisomy Online’s website. It was here that we found the support group listservs. These were basically email groups/bulletin boards dedicated to parents expecting, raising, or grieving lost children with trisomy disorders.
These listserv support groups were an incredible help. We had no idea what to expect or what we were going to go through. Being able to talk to other parents who were living through this, from around the world, was such an incredible relief. We were not alone. We also were blessed to have a very supportive family that checked on us frequently to ensure that we were okay.
The pregnancy progressed for about another 4 weeks. On August 3rd, Katie’s birthday, we paged Peggy because Katie had not felt much fetal movement for the past day or so. We met Peggy at the hospital, because her office is closed on Saturdays. She checked for fetal heart tones, and we were told that they were fine. We listened intently and enjoyed every second of hearing those heartbeats. As it would turn out, it would be the last time we heard them.
Katie and I spent that weekend on the Oregon coast. We stayed at a couple of lovely bed and breakfasts and enjoyed a wonderful few days for Katie’s birthday. The following Thursday, August 8, 2002, was our regularly scheduled monthly appointment. At that visit, Peggy, the nurse midwife, was unable to locate fetal heart tones. She called me immediately, because I had gone to Tae Kwon Do class and missed this one visit. This was the only visit I did not attend.
Katie was sent over to the hospital (approximately 200 feet across the parking lot) for an ultrasound. She was met by her mother, Jessie, who was working at the time in the maternity ward. I headed straight to the hospital and met them both just before the ultrasound was getting ready to start. This ultrasound confirmed our worst fears. Our angel, Abigail, had already gained her wings.
We were sent upstairs to the maternity department for labor to be induced. This started at 6:00pm on August 8th. I sat awake throughout the night, watching at Katie slept fitfully with the help of an epidural. At around 9:30am the next morning, Katie said that she felt an urge to “push”. Peggy was called in, as was Jessie and Katie’s nurse. After only a few pushes, Abigail entered the world at 10:04 am on August 9th, 2002. She weighed 1lb 7.6oz and measured 11 1⁄2 inches tall. The most difficult part of the delivery was having Katie push, and not hearing a cry.
Nonetheless, we were able to hold Abby and bond with her. That evening, Katie’s father flew in from Indiana, as did her best friend, Leigh, and my sister. Jessie and I went to the funeral home that afternoon to start making arrangements. Katie stayed at the hospital, holding Abigail, waiting on our family, and recovering herself.
Late that night, after all of the family that had arrived was able to hold Abigail, we placed her body back in the nurse’s care. The nurse then made arrangements for her to be transferred to the funeral home for services. My mother, aunt, and cousin arrived the next morning.
The service was held on August 12, 2002 at 10:00am. One of our pastors read scripture and a church member sang a couple of songs – including “Jesus loves me”, a favorite children’s hymn. We also released balloons during the service for several family members that were unable to be here.
Our family returned to Indiana later during that week. That was when the hardest times started. After all of our family, friends, and support had left our house, we were left with an empty, quiet house and too much time to think. We had already decorated Abby’s room and painted the walls with butterflies. The door to her room had to be shut for a while, because neither of us was able to deal with it.
In the time since her delivery and burial, Abigail has been sorely missed. Katie and I had been trying to have a child and I think that made it even harder. We have since continued to communicate with other parents via the listservs. Katie even created her first webpage, dedicated to Abigail.
Without the support of our family and friends, the wonderful support of our Nurse Midwife, Peggy, and our faith in God, Katie and I would never have made it through this trying time. We have managed to come through the other side of this dark time even closer than before. We have decided recently to try to have another child. We know that, God willing, we will have a child-filled family some day. However, Abigail Renee Wheat will always be our first child, daughter, and angel.
In memory of our daughter, Katie and I began a non-profit organization in October 2003. To learn more about it, please visit A Butterfly’s Touch.