Little Miss Darcie Do. The Beginning.

I have a lot to say about our baby girl, Darcie. We found out she was on the way with a call from the doctor on July 23rd 2011. I got pregnant around June 24th so we were a month along. It was a big surprise because I was on birth control and because I had my period just over a week earlier. I had been feeling sick for a few weeks and having abdominal pain. We thought it was my appendix. We were thrilled to find out we were having a baby even though it wasn't what we expected or planned.


On July 26th I started bleeding again and called the doctor. She told me that I could be having a miscarriage but all I could do was rest and wait to see what happened. After a few days I was doing better but I continued to try to take it easy. On August 18th I was resting in bed when I suddenly felt very strange. I was bleeding again and passed a softball sized blood clot. I was heartbroken and convinced I had lost the baby. We went to the ER and were told I could be having a miscarriage. They did a ultrasound and we saw the baby and heard the heart beat. She waved her little hand at us as if to say, "Don't worry I am fine!" I was sent home and put on bed rest. August 22nd we saw the OBGYN and heard the heart beat again. She said I may have miscarried a twin but the remaining baby was fine and growing. We were so relieved. Our baby was a fighter and wanted to survive against all odds.

On September 26th we went for a ultrasound and found out our baby was a girl. We were so excited. She would even up the teams. Two boys and two girls and two very blessed and happy parents. The ultrasound tech said the doctor needed to talk to us and left the room. That made us a bit nervous. The doctor came in and looked at the pictures then said she wanted to check a few things. She ran the wand over my stomach a few times and then gave us the news. Our baby had some markers that concerned them. They found a hole in her heart which they told us may heal and close up on its own before birth or shortly after. They saw an echogenic bowel, a bright spot on the bowel, which could be a sign of bleeding, obstruction, or infection. They also saw esophageal atresia, a congenital disorder of the baby's feeding passage that connects the back of the mouth with the stomach. Instead of connecting the mouth to the stomach it ends in a blind pouch because of a missing segment of esophagus. Finally, they measured her nuchal translucency thickness at 2.9. A measurement of 3 and above is considered elevated so she was on the borderline of normal.  All of these issues are markers for Down syndrome. 

I tried to ask questions but I burst into tears. I was picturing my baby being taken away for surgery over and over again to try to correct these medical issues. The doctor tried to comfort me and Harry held me tight. The doctor said she wanted to send us for additional testing. It could turn out to be fine. We consented to blood work but refused the amniocentesis because of the risk of miscarriage. We knew we loved our baby girl from the moment we were aware she existed. We would not consider terminating the pregnancy regardless of what testing may show. There was nothing that could be done to treat her prenatally so there was no reason to perform a risky test to find out ahead of time. 

The next few months were up and down and uncertain. The blood work they did to test my hormones and proteins came back normal but because of my age (39) and the other markers they told us we still had a chance of Down syndrome. We were not concerned about a possible Down syndrome diagnosis. Harry and I met while working at a hospital for children with developmental disabilities. We know some amazing people who happen to have Down syndrome. We felt we were well prepared for welcoming a special child. What we worried about was the heart defect and other health issues that may complicate her life. 


We had many ultrasounds done throughout the pregnancy. Every time we went to the doctor the news seemed to get better. During later exams they didn't see any issues with her esophagus and they could no longer find the hole in her heart. Her bowel looked fine and her femur was not shortened (another marker for Down syndrome). We decided to wait patiently and see what the future would hold. We knew it would be hard sometimes but it would always be worth it. 


We were told we had a 1 in 100 chance due to my age.
A 1 in 15 chance with age and the elevated nuchal translucency.
A 1 in 3 chance with age, nuchal translucency, and the markers that showed up on the ultrasound. 
92% of parents who are told prenatally that their child MAY have Down syndrome choose to terminate the pregnancy. 
I can't imagine giving up this gift we have been given.