Savanah's Birth Story - Part Two

Learning Our Baby Has Down Syndrome

In the morning, they came to take him to the pediatrician. I thought we'd be able to go with him, but the nurse told me no. “Well, please be careful with him, and try bring him back soon,” I begged. We waited some time before the pediatrician came in. She asked to just speak to me and Spens and sent our visiting family out of the room. I knew something wasn't quite right, and my heart started to race. Spens was barely awake and didn’t hear as she spoke very plainly to me.

“We did a full exam on your baby, and we found him to have traits consistent with Down Syndrome…” she continued to speak but my ears rang loudly…

What?…I couldn’t believe it…everything around and within me came to a screeching halt. I heard bits and pieces afterwards, like heart disease, thyroid problems, developmental delays. She listed all the ways my sweet new baby could suffer and I felt hot tears stinging my eyes. How could this be? She told us about all the tests we would need to do, apologized and left the room. Since Spens didn’t hear the first part as he was still waking up, I had to reiterate what the doctor had just told us. I broke down, sobbing. He held me so tightly and stroked my back. I immediately messaged my birth team, distraught, searching for any kind of support. 

It would be hours before I saw my baby again. And I cried myself to sleep, exhausted.

I woke to them bringing him back in the room, and I jumped up to grab him. I picked him up and held him so close. I teared up looking at his beautiful face. And then I scanned his body, noticing a big bruise on his hand, several scabs from needle pricks in both his arm and his foot, scratches on his wrists and ankles from all the little bracelets they had on him. I looked at the way his head got blistered and bruised from the vacuum assistance during his birth. And in that moment, what was left of my heart crumbled in my chest and I sobbed again. My poor sweet boy had been through so much and he wasn’t even a day old.

I was so angry, so overwhelmed. I did everything I could to make sure my baby had as little trauma and was as healthy as possible, and here we were. I felt like I had failed him, and I hated myself for it. How could I be a good mama if I was already failing to protect him? I held him so close as the hot tears continued to roll down my cheeks.

That was the beginning of the longest 3 days of my life so far. We had to stay at the hospital so they could monitor him, a vicious cycle of them taking my baby away for too long and taking forever to get results back to us. Fortunately, we had a great support team while there. Our family stayed. One of the night nurses took extra good care of us. And my doula and midwife came to visit. I don't know what I would have done without their support and encouragement.

We got the information in pieces, his heart seems good, but we’ll need to monitor it for a couple days, do more ultrasounds.

His thyroid and blood work came back, and it looked like everything was very healthy for now.

His trauma put him at high risk for jaundice, and we would need to work to fight it. Babies born with Down Syndrome have low muscle tone, and generally have a harder time latching long enough to get a full feeding, but I was determined to feed him with my milk. So we were given a lactation consultant, (who was an absolute angel) and she helped me pump and feed him. So, round the clock pumping, and keeping him under bright blue light with this terrible little wrap on his head. He hated it, and none of us got much sleep because of it. 

There was a lot of crying. But there was a lot of smiling too, so much admiration for our little bear. When we look at him, we see nothing but our strong baby boy.

I felt many negative things over those days: grief for my ideal home birth, saddened by the early conclusion of my pregnancy, angry that my baby had been through so much pain, frustrated that I felt so helpless.

But I felt many positive emotions as well: absolute joy holding him to my chest and staring into his beautiful eyes, pride in myself for accomplishing an unmedicated natural birth, gratitude to my amazing partner, family, and birth team which continued to support me, and pure love for my brave little one.

Those three days blurred into one long day of people constantly checking in on us, getting little to no sleep. They finally let us leave on Saturday, feeling confident that he was in perfect health for now. We were exhausted and so ready to be in our own home/bed.

Monday morning, they called us with the chromosome test results. They showed he is positive for Trisomy 21, or down syndrome. It is a genetic disorder that is caused by an error in cell division that results in an embryo with three copies of chromosome 21 in every cell, instead of the usual two. It affects every person with it differently. It is not hereditary, and we don’t currently have an explanation for why it happens. The odds were 1 in 1500 for a woman my age, and you can't fix or cure it, so I never bothered to have any prenatal tests done. However, so far, we beat a handful of scary health statistics, and feel so blessed that our little Leo is such a healthy baby.

The universe and all its mystical ways decided to make this a part of our journey. We feel incredibly lucky to have this sweet baby boy in our life. We aren’t certain what the future holds for us, but we are excited to learn and grow as a family, and we’re taking things one day at a time. We are certain that we are going to do everything that we can for him.

This is not what we expected, but it’s what fate felt we needed. Nothing went how I spent 9 months imagining it, yet everything seems exactly how it should be. Nothing has changed.

I love my baby more than I have ever loved anything in this world. And for now, that’s all that matters.