Our Trisomy 18 Angel

            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 ˝ 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.

                             

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