That Moment in Time - The Diagnosis

I remember talking with my husband about prenatal screening. I told him that I wanted to do it. I didn't really have a reason other than I did it with my first one, so I wanted to do it with this pregnancy too. The Maternal Fetal Medicine (MFM) Doctor told me “It’s highly unlikely we will find anything, and if we do it’s usually a false positive." So, I did the blood test and went on with my day. My MFM Doctor called me and said "Mrs. DeCorsey, your blood test came back positive for chromosomal abnormalities. Now this isn't 100%; you have a couple options: you can do a Chorionic Villus Sampling (CVS) right now because you’re only 8 weeks, you can wait a few weeks and do an amniocentesis, or you can do nothing and proceed with the pregnancy." All in one sentence, that doctor changed my entire perception of my pregnancy; suddenly I wasn't excited, I was terrified.

I immediately said I wanted to do the CVS; I knew I wouldn't sleep until I knew for sure. So, on a Friday afternoon my husband and I went into the procedure room and had the CVS done. The doctor came back into the room and explained that the results would take about a week. He also explained how Down Syndrome can happen. I was positive that this was all a mistake and this sampling would show us that. I was nervous, but so hopeful that it wasn't true.

The following Friday I was anxiously awaiting the call. Nothing. No Call. Monday came and went, no call. I knew my MFM doctor was leaving Tuesday for an outreach clinic, but I called anyways. I explained I wanted to know my results. After a long hold, someone came on the line and said "Mrs. DeCorsey, your doctor wants to speak with you directly. He should be calling you shortly." My heart dropped. I think at that point I already knew what I was about to be told, but I didn't want to believe it. My phone rang, the caller id "unknown". As I answered the phone and my doctor told me who he was and that he was calling regarding my CVS results, I froze. I had been sitting at my computer scoring though my medical records to see if could find the results myself. I sat and stared at the screen as I heard "Mrs. DeCorsey, I'm so sorry I wanted this call to come from me directly, your results from the CVS were conclusive that your child will have Down Syndrome. Also did you want to know the sex of the baby?" I think on auto pilot I said "yeah." He said you'll be having a baby girl. Now we can talk about the options you have in a few days when I get back if that's alright." I responded with "Yeah, that's fine thanks for the call." I hung up and I felt nothing at first. Then slowly I realized I needed to tell my husband, and our son Landyn. I finally told them, and I said, "but I researched the test and its only 99.8% accurate so there is still a chance that she won't have Down Syndrome."

In a world where the answers are at our fingertips, I naturally googled “Down Syndrome”. I knew, or rather "thought" I knew what it was. Afterall, I had an aunt, Teresa, who had Down Syndrome that passed away in 2009. My search brought up pictures that terrified me. There I sat convincing myself that 0.2% was enough chance to believe that my child was not going to have any diagnosis, let alone Down Syndrome. As the pregnancy progressed, I went through a roller-coaster of emotion. Days where I would ask God "Why? Why me? What did I do to deserve this?" On the days that I believed that she might actually have Down Syndrome I wondered if I was being punished for all the mistakes and bad decisions, I'd made in my life up to that point. I knew and felt in my heart I was to blame. Other days I was absolutely convinced that she did not have Down Syndrome… I just had a feeling there wasn't going to be any way that God would do that to me, I just knew it! I reviewed some resources but knew I wouldn't need them, because after all there was no way, my daughter would have Down Syndrome.

I was at work on August 30th and told my coworkers I was going to go to the prenatal unit to get checked out because I wasn't feeling right. I had worked that morning, but something was off and I had a horrible headache. A few weeks before I was told that I had pre-eclampsia (high blood pressure) and one of the symptoms that it was getting worse was a headache. Rather being safe than sorry I went in. I called Ryan and said, "I'm sure it’s nothing but I just wanted to let you know I'm going to get checked out." In a matter of hours my blood pressure got so high that my kidneys began failing. Ryan wasn't at the hospital yet, so I called and calmly told him that he should probably come because it sounded like they were going to keep me overnight. Shortly after he was there, and we were talking scenarios with the doctor. Due to my failing kidneys I was not producing urine but thought it might be caused from stress and dehydration, so we discussed a plan with the doctor and I was put on a “urine challenge” for the next 12 hours. Our nurse was fantastic and kept us entertained throughout the challenge while feeding me water and trying to get me to “fill a bag”. I failed the challenge within the first 3 hours. When the doctor came to discuss options, Ryan had left to go pack us an overnight bag, “just in case we were in the hospital another night or two.” While Ryan was gone, my MFM doctor came in and explained that the only cure to preeclampsia was to deliver and that I was scheduled for 10:00pm in the OR to have a C-Section and deliver. It was 6:00pm and my husband wasn't even there, but I had to stay calm to keep my blood pressure down. I calmly called Ryan and told him we would be having a baby “tonight.” Ryan was dropping our son off at his grandparents when I called, so I got to break the news to Landyn that his sister was showing up early because she couldn’t wait any longer to meet him.

They wheeled me back into the OR first to get me ready for a c-section. I’m glad Ryan wasn’t in the room right away; I was told they were going to give me a medication that would quickly lower my blood pressure (it was very high) and the nurse anesthetist told me to let him know if I started feeling dizzy. I couldn’t even get the words out all I said was “help” and I heard him saying “the medicine is on the way just hang in there, it’s coming, stay with me” I crashed right there on the table. I barely had a heartbeat. All I saw was a bright white light, but I had felt a peace that I had never known, a calm that felt so foreign, I was convinced in that moment that I was dead but somehow it felt really good to be wherever I was. It was a total of about 1.5 minutes where I was “crashing” in the OR. Then I came back and just started crying and smiling. They brought Ryan in after I was stabilized. I couldn't accurately describe to him what had just happened. We talked for a bit before the doctors started the C-Section, and I told him that I wanted to make a workout DVD for women about to have this procedure. I was feeling great due to the medication they used to bring me back and even began to do OR table arm raises. (Oh my stars, what was I thinking?) Mila Jean DeCorsey arrived on August 30th at 10:53pm. I remember asking right away "Does she have Down Syndrome?" The details are a bit fuzzy but at some point I was told that yes in fact she had Down Syndrome. I started the grieving process all over again. It took a few days for it really to sink in. I remember one of the nurses in the Intermediate Special Care Nursey (ISCN) telling me that Mila was likely doing so well because she had Down Syndrome. That was the first time someone in a medical position said something positive and hopeful about having a child with DS.

Fast forward to today 4.5 years later. Mila is the center of our world. I cannot believe that I was hoping for a child without Down Syndrome, because life just wouldn't be as sweet without our Mila Jean and her extra chromosome.

For any parent out there wondering if going through a grieving process is normal, it is. Let yourself grieve, feel it all. When you got pregnant you never envisioned having a child with a disability. You never envisioned being a special needs parent. Its ok to hate the diagnosis, its ok to cry about the challenges, its ok to get angry with God about it all: He can handle it.

FEEL IT ALL.

Do you have a diagnosis story you'd like to share? Please feel free to reach out and share your story! Email it to jewels@321motherhood.com