Discovering My Child’s Down Syndrome at Birth

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Pregnant woman bellyat home insemination kit

March 22, 2022

I had meticulously planned every detail of my pregnancy and birth experience. My partner, Jake, and I attended Lamaze classes where we practiced breathing techniques, explored birthing positions, and set the perfect mood to ensure that the arrival of our son, Leo, would be magical. I chose a birthing center renowned for its warm atmosphere, feeling that a hospital would be too clinical for such a special occasion.

As my due date approached, my midwife informed me that Leo was now footling breech. While this can present in various ways, Leo had taken to doing splits. My midwife reassured me that there was no need to panic; he had ample amniotic fluid to maneuver, and we could attempt an External Cephalic Version (ECV), which is a procedure to turn the baby by manipulating the belly. Unfortunately, the attempt was unsuccessful. Leo was determined to showcase his flexibility at the most dramatic moment! I remember feeling a mix of pride and frustration, even shedding tears in a coffee shop while writing thank-you notes for my baby shower.

My dreams of a serene, candlelit water birth quickly shifted to the stark reality of a bright, sterile room filled with medical equipment and a scheduled C-section. After being turned down by several doctors for a vaginal breech delivery, I mourned the birth experience I had envisioned and reluctantly agreed to the surgery. I hoped Leo would share my birthday on the 21st for a fun golden birthday celebration. However, his entry into the world held more surprises than I anticipated.

As I lay there under the harsh lights with my abdomen exposed, my obstetrician briefly held Leo up for me to see. My immediate thought was, “What a swollen, purple baby!” They whisked him away, summoning a NICU nurse while the room turned silent. Jake was quiet, too, but I sensed he was grappling with more than just the moment of becoming a father.

I noticed Leo’s almond-shaped eyes and the absence of a nose bridge. Jake asked a nurse if Leo appeared to have Down syndrome. At that moment, there were about seven or eight medical staff in the room, and most were focused on Leo, but I caught a nurse’s concerned glance directed at me. Someone spoke up, “Dad asked if baby has Down syndrome.” My initial reaction was disbelief; I exclaimed, “Whaaat?? Really?” Jake turned to the nurse, who confirmed with a nod.

You might wonder how I felt in that instant. Truthfully? I was filled with excitement, eager to hold him. Nothing had really changed for me; I had spent nine months bonding with him, and he was already my beloved son. My next thought was, “Is he going to be okay?” I was anxious they hadn’t placed him on my chest yet. Sensing my worry, the anesthesiologist’s nurse leaned in to reassure me, saying, “You can tell by the mood in the room that he’s okay. They would have taken him by now if things were dire.” I needed that reassurance; any longer without him, and I might have broken down.

Finally, they placed Leo on my chest, and I embraced the moment I had long awaited. He was here! He was in my arms! My heart soared.

Although Leo had some trouble breathing independently, we couldn’t go home until his oxygen levels stabilized. My mom managed to lighten the hospital’s atmosphere by bringing me sushi—my first non-pregnant meal—and indulging in frequent pastry runs. We grew close to the NICU nurses who cared for Leo. What began as a few extra days turned into several weeks filled with pastries and reruns of our favorite shows.

After nearly a month, Leo still needed support for his breathing, but he had improved enough that we were finally cleared to leave the hospital with an oxygen tank. Jake got quite the workout carrying Leo in his car seat alongside the oxygen equipment.

Once home, I sat on our couch, letting everything sink in. After weeks of consultations with doctors, specialists, and lactation consultants, we finally had time alone as a family and felt incredibly fortunate. Reflecting on it now, I realize how lucky we were that Leo came home with us. There were moments during my pregnancy when I worried about him not moving, leading me to several unscheduled stress tests to confirm his heartbeat. Thankfully, he was always strong.

It’s rare for a 26-year-old to have a baby with Down syndrome, but even rarer that Leo made it to birth—about 50% to 75% of fetuses with Down syndrome are lost before term. This is why I want to shout from the rooftops how special Leo is! His birth came as a surprise, and while Jake and I processed it differently, we grew stronger as parents. Leo is extraordinary because of his extra chromosome; he’s one of a kind and truly a miracle.

Fortunately, he didn’t need oxygen support for long and we were cleared to discontinue it by the new year. Leo is now a joyful, thriving toddler who fills our lives with endless hugs, kisses, and a smile that brightens any room. He loves us unconditionally, and trust me, the feeling is mutual.

For more insights into pregnancy and home insemination, check out this excellent resource from the CDC. You can also explore related topics in our other blog posts, such as this one, and learn more from Make A Mom about the process.

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In summary, my journey of discovering my child’s Down syndrome at birth was filled with unexpected twists and turns. Despite the challenges, Leo has brought immense joy and love into our lives, reminding us every day of the miracle he is.


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