Prenatal Diagnosis

 I often think back to those cold November days back 2007. I went to a Maternal Fetal Medicine specialist due to my blood results showing a slightly higher risk for genetic problems. In my mind I was just going to prove to everyone, including myself that my baby was just fine. After all, we had just had the regular ultrasound and everything looked just as it had before with my other two sons.

As I entered the office, I was still feeling a bit sad that we were having another boy and not a girl. You see we had not planned on having another baby. But before her death the year before, my mother kept telling me that I needed to have a girl. So somehow, in my head, I had concluded that she was guiding me from heaven, and she would make sure everything was fine.

It was such an emotional time. My dad had passed away just a month before. His wish had been to die at home, and with some hard work, we were able to grant that wish. I had been working full time, trying to take care of my family and Dad too. That with being pregnant was taking it toll. I was tired.

Yet sitting in the waiting room of specialist office that Thursday morning, I felt excited to see my baby on through the more powerful ultrasound and strangely optimistic that everything would be OK. Little did I know then.

Randy had been working up in Omaha at Children’s Hospital at that time and it was a chore for him to make it to any of my doctor appointments in Lincoln. However, we were able to get an early morning appointment, so he was able to be with me. As we watched the screen, the technician pointed out all four chambers of his little heart, confirmed again that he was still a boy, and took all the normal measurements. Nothing seemed out of the ordinary. She finished and said the Dr. would be in shortly to discuss the findings. I was more convinced than ever that everything would be fine, but then the Dr came in.

He said there were a few soft markers that could indicate Down syndrome. There was some fluid around his heart, and his nuchal fold was .1 higher than the allowed limit.

The Doctor suggested and amnio if we wanted to know for sure, and proceeded to tell us the risks and dangers of sticking a gigantic needle in my stomach. As much as I hate needles, I knew I had to know for sure that my baby was OK. So he went ahead and did the amnio, stating that he would have them do a special fish test so we could get the results quickly.

I went back to work and scoured the Internet for information about Down syndrome and soft markers. Why hadn't I done that before the appointment so I could have been more prepared?

I know why. Because even at that point I was still in serious denial.

It was a stressful night and even more stressful day at work the next day. I had given the doctors office my work number to call. But I could not focus on work and spent most of the day on-line trying to prove to myself that my baby was healthy.

A few of my close co-workers would stop by and try to give me words of encouragement, and tell me stories about this person or that person who had a false positive on their blood test, but it did not seem to help.

By the time I got home that Friday afternoon, I was just ready to know the answer. Sure enough there was a message on my machine to from the Dr. with a number to call back. I tried calling but the phone did not ring through. I tried calling the office, but it was already 5:30 PM on a Friday afternoon. They said they could try his cell number, I read off the number he had left for me to call and they told me it was his direct cell number. (Looking back, I should have known right then what the answer was, as Dr.’s don't usually just give you their personal cell number to tell you results are normal). I tried calling the number a few times throughout the evening with no luck. I found out the next day that our main cellular service provider had a major outage, which was why I was not able to call the Dr. back.

By about 9:00 Saturday morning, I could not take it any longer. I called the Dr. back and he answered. He said the words I never in a million years expected to hear. "Your baby has Down syndrome". He suggested we meet with him again on Monday or Tuesday and that we make an appointment with the pediatric heart specialist first. The baby had fluid around his heart, which could indicate congestive heart failure, which meant the baby might not even make it to term. If after more testing they determined that the baby was not going to make it he suggested we seriously think about terminating the pregnancy

I was devastated.

Randy had gone over to mow at the other house. I left the boys watching a movie and drove over to tell him. He was visibly upset as I was, and each of us had lots of questions. Questions that would not be answered on a weekend.

I called my sister-in-law who lived in Minnesota. I remember her telling me that the whole family was going to love little Ben no matter what. Next I called my friend Jo, who was also very supportive. After a while it seemed I could not talk about it anymore so I sent an email to the rest of my friends. The rest of the weekend I spent crying off and on.

The boys were wondering what was going on, so I told them baby had Down syndrome and that there may be something wrong with his heart. They took it great and just hugged my tummy more.

While some of the rest of the weekend was spent mourning the loss of the baby I thought I was going to have, most of it was fear that the heart issues would be so serious that he would not make it to term. I remembering telling one of my friends, who called that if it was just Down syndrome, there would be no question that we would keep the baby. However, if his heart was so bad that he would die, I did not think I would be able to carry a stillborn baby.

I called in to work and told them I would not be in for a few days and was able to get in to see the Pediatric Cardiologist at the first of the week. My cousin Susan who happens to be a nurse in that office met us there. She came in and was very supportive. The Dr came in and did an ultra sound on what looked to be an out of focus black and white t/v monitor. I don't know how she could have seen a thing on that. But her response was that his heart was relatively good shape and that at this time all she could see was a small VSD. She drew a picture of how the chambers form and how his just did not quite close. I was so relieved

Every step of the way, we had Doctors and nurses reminding us that we had just a few weeks to terminate the pregnancy. However, as soon as I knew the baby's heart was OK. I was not going to be the one to give this baby back to God. If he wanted him, he would have to take him.    

It makes me sad to think about how many babies are terminated because they might not be "normal".  Every morning when I am greeted with that sweet smile it just melts my heart.  God does not make mistakes.

It was also around this time that I realized that I had been praying for something to help our family. Something to help us be more patient, loving, and accepting with each other, and it hit me that this baby just might be the answer to my prayers. Little did I know at the time just how right I really was.