My Life Changed Forever
Diagnosis: Severe Meconium peritonitis and brain calcification
In the beginning, I always felt an uneasiness about the pregnancy. I can't explain it I just felt different.
I was 16 weeks when we first received horrible news. My triple screen came back indicating a genetic disease. We had to go for an amniocentesis and
wait two weeks for the results. Our results came back negative for all three disorders and for the rare genetic disease. My husband and I were so happy.
We were asked to come back to the hospital and have an ultrasound done.
At 18 weeks she looked perfect. We were given pictures of her.
During the second ultrasound when I was 21 weeks, the tech was telling how beautiful she looked. Everything looked normal. We watched her move on the
screen. Then the doctor came in and started to do a more detailed scan of the bowels. They then told us that they had found meconium peritonitis.
Calcification had formed on the bowels and had just begun to show. They told us that this had probably occurred early on in the pregnancy.
We were sent back to a medical genetics counselor for the third time and they went over what they thought it might mean. We were given a bunch of
statistics and horrible outcomes. We were always reassured by the doctors that it was probably nothing and that everything would be ok. My husband and I
then had to get blood work done and then they had to re-test the amnio fluid. We had to wait another two weeks for the results.
When we got our results we were relieved. All the tests came back negative so it looked OK. Our baby girl might have to have surgery right after birth
to correct her bowels, but that was only a maybe. They told us to come back for the ultrasound just to make sure the bowels hadn't distended.
During this ultrasound the tech told us that everything looked normal. Then the doctor came back in and did a detailed scan of her brain. They then
proceeded to tell us that the they thought they saw some "shadowing" in her brain. We were sent back up to Genetics and were given our options. I was now
23 weeks 4 days, so if we wanted to end the pregnancy we had to decided that day. The doctors told us that they did not have enough concrete evidence to
warrant any further concern. They told us that we should come back when I was 32 weeks.
During my ultrasound I had picked up something from the doctor. I felt as though she thought something really was there but she was not willing to risk
misinforming us, in case it was nothing. Because of this we insisted that we come back in two weeks to have another ultrasound, just in case. We were told
over and over that everything was fine and that nothing was wrong. I was not convinced.
The hardest part of this experience so far was knowing that terminating the pregnancy could very well be an outcome. In our country the cut off is 23
weeks 6 days. If we were going to do anything we had to decide before we left the hospital. I was terrified. How could I make this decision on what
little information I had? We decided to come back in two weeks.
I was almost 26 weeks. I showed up for my ultrasound by myself. I was scanned for almost 2 hours. This is when my life forever changed. The scan showed
that her little brain was severely calcified, parts were not symmetrical and there was fluid. The doctor took me into a room to talk to me. I told her
"please just tell me the truth I need to know." The Doctor said that she had no idea what this meant but that she felt something was terribly wrong.
Within two weeks her brain had gone from "normal" to massive problems. I was sent up to Genetics. The counselor told me that the genetic doctor wanted
to talk to me. I requested that they wait until my husband got there. The conversation with this doctor was the same, she felt that something was terribly
wrong, but they had no idea what it was. "This looks like the tip of the iceberg" we were told.
The hardest thing I've ever had to do in my life was to decide to terminate this pregnancy. This all happened on a Wednesday.
Friday we had to go and talk with some perinatologists. They told us that they had never seen this before and that they could not tell us what the
outcome would be. We did not even get a percentage of what her life would be like. They told us that she possibly could die in utero, die shortly after
birth, or be a vegetable. They told us that we could wait another two weeks and have another scan and possibly an MRI. How could I go on another day? It
killed me to feel her move around inside. This was so awful.
We had another appointment with the doctor that performed the terminations. We were told that with my conditions and the lateness of the pregnancy he
did not feel he could give me the care that I required. That's when we were referred to the Women's Clinic in Wichita, Kansas.
I was 27 weeks by this point. I was terrified. The moment I met the doctor, all of that ended. He was a wonderful and loving man. I came in on Monday
and gave birth to our baby girl on Friday. We were able to hold her after, and say our goodbyes. That doctor will always be in my heart.
This happened two weeks ago and sometimes I feel like this isn't real. I miss feeling her inside me. I miss singing or talking to her, touching my
belly and have her respond. The hardest part now is that I will never get to see her smile or laugh or to watch her grow up. A day does not pass that I
don't think of her. I miss her so much.