‘The baby is going to suffer. We can take care of this right now.’ They told me to abort him.’: Mom says she came to ‘peace’ with her son’s Down Syndrome diagnosis, he became a ‘warrior’

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“Eli’s story began years before he was born. After my husband Eric and I had our third daughter we thought our family was complete, so my husband got a vasectomy. The doctor told us to be very sure we were done having kids. I remember thinking I’ve always had a heart for foster care and adoption and that if we decided we wanted more kids we could always go that route. Fast forward a few years and I was dropping my youngest daughter off for her first day of kindergarten. I remember all the other moms were excitedly busy making plans to go to kickboxing class and deciding which movie to go see. They were so excited to finally have some freedom after their last kid was finally starting school. But not me. I ran to my car and cried my eyes out. I didn’t want to be done having kids. I didn’t want to go to the movies or work out (and if I’m being honest, that’s never going to change ha-ha!). So began our journey down the road of foster care. It was closed doors left and right from the very beginning. I felt so defeated. Finally, Eric and I sat down to make a plan. We wrote out on a piece of paper our options:

Continue trying to do foster care/adoption

Be thankful for the 3 children we have and stop trying for more

Vasectomy Reversal

We wrote out all the pros and cons we could think for each. Vasectomy reversal had the longest con list: expensive, no guarantee, a surgery, and so on. The very last thing on the con list (which I’m ashamed to say was a con in my mind) was Down syndrome. I told Eric I really felt like the baby would have Down syndrome if I were to get pregnant. He told me that was silly and that the chances of that happening were so slim it shouldn’t even cross my mind. He said he would even do some research. Three days later he told me he had crunched the numbers and I had a .03% of having a baby with Down syndrome. I told him I still couldn’t shake the feeling, and we decided to look into vasectomy reversals. We found a doctor in Texas that does them for about a third of the price as a ministry. We made the appointment and within a few months Eric had his reversal. The doctor told us if we were to get pregnant it wouldn’t happen for at least 6 months. Well I got pregnant the very first month. We couldn’t believe it!

With my girls I had to wait till my 20-week ultrasound to find out the sex, but now that you can get ultrasounds in strip malls, I made an appointment to find out the sex as soon as I could. This was right around the time that a blood test could tell you the sex almost immediately, but we declined any screening.

We took all 3 girls with us to the appointment and on the way, we talked about this baby and what our ideas of them were. ‘I think it’s another girl! No, I think it’s a boy! But I want a baby sister!’ And back and forth. We took bets of what we thought the outcome would be and I think the final count was boy: 2 and girl: 3. We finally arrived, parked in the closest parking spot we could find and made our way in. We were greeted by a girl who looked to be around 18 and she led us all back to a dimly lit room. She told us to wait a moment and that someone would be right with us. Another girl entered who looked even younger and she greeted us quickly and asked me to lay down on the table. As she turned off the lights, I pulled my shirt up and exposed my tiny baby bump. She put the cold gel on the ultrasound wand and began to rub it on my belly. Immediately we saw a tiny form pop up on the screen. A view of this little life growing inside me. She quickly found what she knew we there to discover and she announced, ‘It’s a boy!’ We all began cheering and crying. The life I painted for him flashed before my eyes. I saw him grow up, get married and have children of his own.

Then came our 20-week ultrasound. Eric and I went alone because we already knew the sex, so there was no need to drag the girls along. We were the last patient of the day and the doctor had already gone home. We came back to the same room I had done the 20-week ultrasound with all my girls. The tech made small talk and had a warm smile. Finally, she got to work, and my sons image popped up on the screen again. This time I immediately saw something I didn’t see last time; 2 big black spots inside his belly. I’ve had countless ultrasounds between all 3 girls, and I had never seen anything like that before. My heart sank and began to race all at the same time. I looked at the techs face and I saw her demeanor change right away. No more small talk. No more warm smile. It took everything in me not to jump down her throat with questions but I knew she couldn’t say anything to me. I knew I’d have to wait for the doctor. It seemed like an eternity while she measured and did all the standard ultrasound procedures. As I lay there, tears silently streaming, the dreams of my son’s future all began to die. I pleaded with God ‘I don’t know what’s wrong, but please fix him!’

We left the office with barely another word from the tech, but I knew. I went home and spent way too much time on google. I was able to self-diagnose him with duodenal atresia (also known as double bubble on an ultrasound) which means that his intestines were blocked. This is super common in Down syndrome. I cried and prayed all night long. I finally got a couple hours sleep. When I woke up, I felt a peace come over me. The phone rang almost immediately, and it was my OB. He told me they found three anomalies on the ultrasound: the blocked intestines, a heart defect and fluid on his brain. He told me all three things point to a chromosomal disorder and I needed to come in right away for a higher level ultrasound at the hospital.

This time we took all three girls. As I lay on the table with my son’s image on the screen, kicking and moving and heart beating, the tech says ‘The baby most likely has Trisomy 13 and will be stillborn and if he did survive birth he would need to have open heart surgery right away. We can go upstairs and take care of this right now.’ I couldn’t believe she was treating my son like a mole who could simply be removed and thrown in the trash. My daughters were old enough to know exactly what she was suggesting. I simply said ‘no’ and as we walked out, I felt like I was in a tunnel that was closing in.

We came home and things got worse. I called family members to tell them what was happening and one of our family members who claims to be pro-life told me to abort him because he was ‘only going to suffer.’ It was in that moment I knew I had to protect him. I needed to let the world know his worth regardless of his diagnosis.

We decided to get a blood test called MaterniT21 and we got the diagnosis of Trisomy 21 (Down syndrome) around 30 weeks. I felt so relieved knowing he had a far greater chance of surviving.

He was born full term via c section weighing 4 pounds 3 ounces. When I heard him cry, relief washed over me. A nurse brought him over and I got to kiss him before they rushed him to the NICU. He had his first surgery at 2 days old to unblock his intestines, then it was an agonizing long 2 days before I could hold him again. He was able to come home after only 12 days in the NICU. The next 6 months were a waiting game for his open-heart surgery to repair his av canal defect. After countless visits to the cardiologist for echocardiograms it was time. Handing them over to the surgeons that day knowing I may never see my baby boy again; was the hardest thing I’ve ever done in my life. I had no choice but to trust God. Sometimes the thing you are most scared of can be the very thing that sets you free.

Courtesy of Michelle Sullivan

The surgery was successful, and he amazed us again by coming home after only 6 days in the hospital.

Knowing what I now know, I wish I could go back and give myself a glimpse of what our lives are like now. Yes, our lives are different, but so much better! There is so much more joy, and love and hope. We are stronger, better people because of Eli.

Courtesy of Michelle Sullivan

Eli inspired me to start a tee shirt company for kids with special needs to spread joy, awareness and inclusion. You can follow along @littlest_warrior.

Eli is now 5 years old and the biggest blessing of our lives. He is gentle, sweet and funny. He is curious and loves to learn. He amazes me how quickly he can learn things and he already knows all his letters and is starting to read. Eli inspires me every day to be a better person, to be kinder and to stand up for those who can’t stand up for themselves. He reminds me of what’s truly important in life.

Courtesy of Michelle Sullivan

Knowing what I now know I would tell my terrified self that there can be so much beauty in hardship, that going through all the surgeries and facing the unknown would give me strength I didn’t know I had. Eli has truly enhanced my life. He has given me a love for people with special needs, he’s taught me so much about patience and endurance. He has made me a better person and for that I am so grateful.”

Courtesy of Michelle Sullivan

This story was submitted to Love What Matters by Stephanie Wolfe. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more amazing stories about children with Down Syndrome here:

‘She was the most beautiful baby. But I felt helpless. My wife in the NICU crying, my child on a stretcher crying.’: 2 moms welcome daughter with Down syndrome after miscarriages, she’s ‘the best thing has happened to us’

‘Man. I’m so glad I didn’t miss this.’ I was scared. I didn’t want this life. I didn’t want to be ‘chosen’ for this.’: Mom embraces son’s Down syndrome after admitting fear made her consider abortion

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