Our Trisomy 18 Journey

Happy Valentine's Day!! We found out on February 14, 2003 that we were expecting our second child. I was beside myself. We had agreed that Hunter needed a sibling and I thought Kevin and I would draw even closer than we had already since we reassembled our family again in October of 2002. Kevin just walked around in a dazed state. He couldn't believe it happened so fast!

At our ten week appointment, the OB at Ft. Leavenworth did an ultrasound. Never before had I even heard of having one before the 16th week or so. At this time, the baby was already measuring a week small, plus a fairly large cyst was found on my left ovary. Two days later, I had a sharp pain on my lower left and was instructed by our HMO to go to the local hospital ER. This is what I came away with:

They found two cysts on the left, divided by a septum. Together, they measured over seven cm long and almost five cm wide. They checked the baby and we saw a black line on the light baby. The line started about mid-skull in back and went to the bottom of the neck. The back of the baby's head appeared to be shaped like a peach (or more bluntly, a butt), indenting to the black line. They wouldn't tell me much...

In addition to sending an e-mail detailing the above, I called the doctor on Monday morning. He did the old-school "hand-patting" routine, assuring me that there was probably nothing to be concerned about. I made him promise to call the ER. He did. Two hours later, he called back asking me to come in and pick up a referral for a Level 2 ultrasound. At that point, I sent an e-mail thanking friends and family for their support and asking for their continued prayer. These friends and family were to become and remain a vital part of this pregnancy. Prayer was the Key.

Our next stop was the Level 2 Ultrasound. First, though, we were called in for genetic counseling. We were informed that this visit might indicate chromosomal problems like Down Syndrome, Turner Syndrome, or even something called Trisomy 18 or Trisomy 13. We had never even heard of those last two. Well, confirmed was "Cervical Edema" and an Amniocentesis was suggested. We made it clear that "Termination" was not an option for us. Period. Whatever the problems may or may not be, this baby was a gift from God. That being said, we did want to know what we were up against, if anything. So, the amnio was scheduled for Friday, May 2, 2003.

Knowing it was going to hurt, I was none too excited about this procedure! I did, however, want to know the prognosis, so we pressed on. The doctor did an ultrasound to find the baby's position and found something called an "Omphalocele." Basically, some of this baby's intestines had been herniated into the umbilical cord. The doctor did the Amnio in short order (OUCH!). We were sent home with information on Omphaloceles. The papers talked about them being commonly associated with chromosomal abnormalities, especially Trisomy 13 and Trisomy 18. But, we figured our baby, at the worst, would have something like Down Syndrome, so we didn't really pay any attention to those words.

I spent most of that day in bed, just to be safe. That night, less than 12 hours after the Amnio, I experienced a gush of fluid upon walking to the kitchen. Terrified, we went to the Emergency Room at St. John. Almost three hours later, they tested and told me that it hadn't been amniotic fluid, that I had just wet myself. Laughing about it, we went home, but I stayed in bed the next day to be sure. Every time I went to the bathroom, fluid seemed to leak as soon as I sat down. My mom suggested wearing a sanitary napkin, just in case we had another leak, so we could test the fluid. Good thing she suggested it. Just about 24 hours after the first gush, we had a second one. Kevin was on the phone with his brother. I got him off of the phone and we went to the ER again. This time, we got quicker service and they confirmed it was amniotic fluid. We were given the choice to go home or be admitted. We chose to be admitted.

Sunday, I was supposed to be seen by the OB on call, as my military OB was unavailable. Well, that day happened to be the biggest single day of tornadoes in our local area since 1977. She couldn't even get to the hospital, much less see me. I didn't have any leakage that day, as far as I could tell. Monday morning I was taken for an ultrasound. The technician pushed so hard that I filled a sanitary napkin with fluid. I saw the OB, Dr. Amy M, later that day. She was tender and caring, but straight forward and told us that we had less than a 30% chance of carrying to viability, much less to term (other doctors have told us since then that they would have given us less than a 10% chance).

I stayed in the hospital two more days. Wednesday morning, before being discharged, we had another ultrasound. We had so little water that this tiny baby was literally laying on it's back on the bottom of the uterus with it's feet straight out, holding up the other side of the uterus. We have the ultrasound picture. We were told of all the things that could happen if we actually carried the baby to viability. Things like "amniotic banding" and such. We knew the only way we were ever going to survive this was through prayer. We asked everyone we knew to pray.

The following Tuesday, 12 May 2003, we got the call. The military OB, Dr. M, just told us that the baby had Trisomy 18. I asked the gender and was told she was a girl. That was it. I called the practice that did the Amniocentesis. I was told they were at lunch. I relayed the fact that this was urgent and I needed to talk to someone. I got Dr. R. He told me that Trisomy 18 was "incompatible with life" and urged me to "go ahead and have a D&C." I responded that my baby was still alive. His next words have been forever etched into my very soul: "If you know she's going to die anyway, does it really matter when?" Well, yes, it does. I got off of the phone as quickly as I could and never spoke to that practice again. Kevin was right there with me as I was on the phone. When I told him what the Doctor had said, he was absolutely livid. If we had been in the same room, Kevin would have had a hard time not knocking some sense into that man. I like to tell people that he wouldn't simply have been at Ft. Leavenworth, but IN Ft. Leavenworth (the Military's Prison)!

We had chosen a girl's name while expecting Hunter and had planned on using it this time. Rachel, after my Grandmother. Rachel means "little lamb." After seeing her strength and resilency, we knew this baby was not a little lamb. I got on the internet and began searching names by meaning. I looked up "strong," "strength," "warrior," "fighter," and such. I compiled a list of names for us to consider. We were already thinking of Grace for a middle name, since we knew she was here by God's Grace. I took the list to Kevin (already knowing my favorites but not prejudicing him). He and I easily agreed on one. Audrey. It means "noble; strength." It just fit. So, on Tuesday, 12 May 2003, she got her name: Audrey Grace Upson. It is very special to us, but in a different way than Rachel would have been.

Now, our job was to do everything we could to ensure she made it to viability or term, if possible. We (Kevin and I) made our bedrest orders more strict than the doctor. We kept me in bed probably 95% of the time. Kevin learned that he could cook anything that came from a box or can. I learned that when I used to wish for a month in bed, I had no idea what I was talking about!!! Hunter tried his hardest to take care of his Mommy. As a precious, loving three year old, he used to bring me anything he could reach for snacktime. He would load up my bed with stuffed animals so I wouldn't be lonely. He learned to play quiet games with Mommy and rowdy games with Daddy.

Our Story Continues...