“My husband and I were married a few months after we graduated college. One and a half years later, we welcomed our beautiful and healthy baby girl. When she turned one, we started talking about having another baby. We were excited and were expecting a similar pregnancy to the one I had with my daughter. After our second try, I took a pregnancy test and, to our excitement, we got a positive result.
We decided not to tell anyone until we went in for the ultrasound. The technician probed around my belly awhile. I noticed that my husband’s face got a little serious. The technician told us she didn’t see anything and proceeded to ask if I was around 6 weeks pregnant. I was not. I was 9 weeks. I wondered, if I was having a miscarriage, then why wasn’t I in pain or bleeding? The doctor took us into his office and asked, ‘Do you know what a blighted ovum is’ This question was directed towards me since he knew my husband was in medical school. He explained, ‘You have a blighted ovum, which means there is a pregnancy sac, so your body thinks you are pregnant and is showing all the symptoms, but there is no baby. No baby ever formed.’ I kept trying to repeat to myself that no baby ever existed, hoping this would alleviate the pain a little. The problem was, the baby existed in my mind. We did a D&C and waited the two to three months that our doctor recommended we wait before trying again. We were both feeling optimistic and hopeful, although I was scared to experience that pain again.
To our wonderful surprise, we got pregnant a few months later. For the first sonogram, I held my breath most of the time until I saw that tiny gummy bear on the screen and heard its rapid heartbeat. Once I witnessed those two things, I relaxed and began to enjoy my pregnancy, nausea permitting. Then, I went in for the 12-week screening test with my mother, my daughter, and my mother-in-law. It never occurred to me this was when they checked for markers associated with genetic disorders. The only thing that mattered to me going into that visit was to see my baby move and he did. My son, Leo, was moving, sucking his finger, and squirming around in my belly. My eyes teared as I stared at my baby, wondering whether it was a boy or girl. The tech finished and told us she was going to go get the doctor. All routine stuff that had happened with my first child.
A few moments later the tech came back in and said the doctor wanted her to do a vaginal ultrasound. This was when the first tiny alarm went off in my head. I told my mom to take my daughter home, because it was getting close to her nap time, even though I wanted my mom to stay there with me and hold my hand just in case. Nervously, I asked to go pee before they shoved something near my bladder.
Once I went back into the room, I asked my mother-in-law to wait outside while they did the vaginal sonogram. When the tech finished, she went back to get the doctor. I kept saying to myself nothing was wrong. I had seen the baby move and he looked perfectly beautiful and strong. When the doctor came in, I saw her face. With a serious look she asked me if I was alone. At that moment I wanted to cry. It still had not occurred to me Down Syndrome was one of the many things she could tell me my baby had. I told her I was with my mother-in-law, but she could wait outside. I think part of this was because I felt embarrassed. As the doctor and the tech closed the door behind them, I saw my mother-in-law’s face sitting in a chair. She knew. We both knew something was off.
I can’t remember exactly what the doctor said next, but it was something along the lines of, ‘Unfortunately I see something here that could be a problem. Your baby has a large NT, which is usually a marker for Down Syndrome.’ I wanted to disappear. I’ve never felt so alone in my life. I kept my eyes wide open, scared that if I blinked, I would begin crying. I wanted to be strong and I thought that meant not crying. She went on to explain the possibilities of what my baby could have. Then, she gave me options. Invasive testing to determine 100% if my baby had a chromosome abnormality, termination, or blood work that would give us results that were 99% accurate. The only option to me was the blood work, even though up until week 20 they kept offering us to terminate the pregnancy. I called my husband, who was working, to tell him what was going on. He agreed that was our only option. He affirmed this by saying, ‘It doesn’t matter what the tests say. We will love this baby no matter what.’ I loved him for saying that, but I was still scared. My mother-in-law kept trying to give me reassuring words. She said she was sure nothing was wrong, that it was probably a mistake, and that she thought it was a boy because boys always give mothers the hardest time. I spent two weeks waiting for the results, trying to convince God I wouldn’t be able to handle a baby with Down Syndrome or any other disability. I was even foolish enough to try and make deals with him. God knew better.
Two weeks later, my husband and I found out we were going to have a baby boy with Down Syndrome. We were both 25-years-old with no history of Down Syndrome in our families. Shocked does not begin to describe the emotion we felt. My husband was interviewing for residency in another city when I found out. Fortunately, I had my mother by my side. I could tell she was trying to be strong for me, but I knew hearing the diagnosis was just as hard for her as it was for me. I was confused and scared. My husband’s attitude from the beginning made me love him even more. When he found out the baby had Down Syndrome and that we were having a boy, he said, ‘That’s my boy!’ He was excited for this new journey we would go on together. I wish I shared his strong positive view in the beginning.
Other than finding out at around 20 weeks Leo had a heart condition, which would require open-heart surgery early in his life, the rest of my pregnancy with him went without another hiccup. I tried not to focus on his inevitable surgery and enjoyed the last few months of my pregnancy with him. I pushed Leo out on April 4, at 38 weeks, in under five minutes, while laughing due to nerves.
I was in shock at how easy his labor was compared to his sister’s, which lasted almost 24 hours. Right after the doctor handed me my son, my worries about his heart settled in. I thought, ‘Would they have to rush him to another hospital now for an emergency open-heart surgery?’ My husband told me to breathe and wait to see what the doctors said. I saw that his face was not worried, which helped calm my nerves.
They took Leo from me to get his vitals checked. It seemed good news he was still in the room with us while they were doing all the standard checks. I hoped for the best as I just laid there while the doctor cleaned and stitched me up, unable to do anything but wait for time to tell us what would happen. I got a glimpse of our baby boy as they rolled him out of our room. His eyes were open and looking around. They were a clear blue that were accentuated with his pink face. In that moment I remembered his extra chromosome. I knew the tests had been 100% correct. I saw his little button nose and his almond shaped eyes.
However, in that moment all my worries vanished. That was my little boy and he looked perfect. He weighed 7 pounds 9 ounces. The first months with Leo at home felt like walking on eggshells. We were very careful with him, hoping nothing would trigger an emergency surgery earlier than the ideal 3-month mark. It’s funny because during that time, I noticed my husband and I balanced each other out. For the things I worried about, he was calm and for the things he worried about, I was calm. For example, I worried more about Leo’s future and he worried more about the surgery, most likely because he knew the risks that come with an open-heart surgery whereas I was more ignorant. Fortunately, they were able to wait until Leo was 3 months to do his open-heart surgery and were able to repair it for the time being until he becomes an adolescent.
After a week in the intensive care unit, which included some setbacks, the biggest being a collapsed lung that required reintubation, Leo was sent home. Since then, he has been thriving well, at his own pace, physically, socially, and mentally. He brings so much joy to our world and I laugh now at how scared I was when we first received his diagnosis.
Although he is currently giving me a run for my money with his ‘terrible-two’ stages, I love watching him bust moves when any song comes on. I love that he doesn’t judge who he flashes his big bright smile to.
I love that he requires at least ten cuddle sessions per day. Most of all, I love how he fits perfectly in our family, interacting with his sister, his many cousins, and the rest of the family members who think the world of him.”
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