This is what it felt like to meet my baby with Down syndrome

This is what it felt like to meet my baby with Down syndrome

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When my son, Daniel, was diagnosed with Down syndrome at almost 23 weeks' gestation, I was devastated. And I was scared. First I worried what he would look like. Then I worried about what he wouldn't be able to do. Then, stupidly, I hit the Internet, and began to worry about everything.

I knew Down syndrome is a genetic condition that causes developmental delays, as a result of a third copy of the 21st chromosome. But I didn't know anyone with Down syndrome, so I feared the worst.

It took many soul-searching weeks, but eventually I came to believe that I could probably love my baby who would be different. I was like any other mom with a prenatal diagnosis: I was angry and sad. I mourned the baby I thought I was having, thought I should have. Then, like every other prenatal-diagnosis mom I know, I fell madly in love with my 'different' baby the second I held him.

But I still worried that no one else would love him.

Daniel was delivered, at 37 weeks, into a room full of people waiting to help him. We had struggled with many complications throughout the pregnancy – intrauterine growth restriction, single umbilical artery, ventricular septal defect, preterm labor – and we had a whole medical team present, ready for anything.

Oddly, I wasn't scared. A first-time mom, I was mostly naive about how differently things could have gone. Perhaps the anticipation and nervousness I felt about meeting this baby who I feared might not be loveable to others clouded my perception. But I had become convinced that all of our problems would be over as soon as he was delivered. Then, somehow, we could help him.

They pulled Daniel out via c-section, and suddenly everything was calm and quiet. I suppose because he was my first child, I didn’t realize the fact that he wasn't crying and was slightly purple was probably a problem.

I only got to see Daniel for a few seconds on the TV monitor set up in the operating room before the pediatric cardiologist, pediatrician, and two NICU nurses hurried with him to the NICU.

Alone in the OR, I experienced so many emotions at once, it's impossible to isolate even one. Before I even realized I was crying, I felt tears sliding down the side of my face. I was freezing in the chilly room and the hot tears on my cold skin felt as if they were burning my face.

But as I cried, I also smiled, remembering how Daniel looked shockingly like E.T. – he was skinny, bulbous, and even had a similar skin tone. For someone who’d had no experience with babies, I thought he was a little funny-looking, but not scary. I smiled picturing my husband's face when Daniel arrived. Beaming, he’d said, "Oh my gosh. He's here! He's so tiny!"

And I cried because I was so relieved. I was relieved to know I would love my baby, and my husband would love him, and – no matter if he lived a day, a year, or a hundred years – nothing else mattered.

As they worked on Daniel in the NICU, they worked on me in recovery. My pulse and blood pressure were hard to regulate, and I had an allergic reaction to the anesthesia. My whole body itched insatiably.

Several hours later, friends and family filtered in to see me, and told me how "absolutely perfect" Daniel was. Heavily medicated, and probably in shock, I was numb. After months of diagnoses and scary close calls, and now hot tears of relief, I didn't feel like I could feel anything more in that moment.

Then the nurse snuck Daniel into my room from the NICU. When she handed him to me, I sobbed. I had no idea how powerfully you could love someone so much the very moment you meet them. I held him, touched his incredibly small fingers and toes, and cried. They were right – he was perfect.

I drank in every millimeter of him. And I realized he wasn't a baby with Down syndrome, he was just my baby. And a huge weight lifted from my heart. Every single fear I’d had about who he would be, or if I would be able to handle who he would become, was just gone. He was mine, I was his. And that was it.

Daniel is a big kid now, and he makes my heart sing every day.

To moms expecting a baby with what seems like a scary diagnosis, this is my advice:

  • Despite your fears and doubts, you will be able to love your baby, more than you ever thought possible.
  • Don’t worry about what other people will think, because they will surprise you. People who love you will love your baby.
  • Celebrate your baby. While he may have special needs, allow yourself to be excited to meet him, and go ahead and buy him all the nice things you always imagined; he deserves them as any baby would.
  • No matter what your fears try to tell you, your baby will still look like you, or his dad, or siblings. He will still have tiny fingers, toes, and lips that will all need kissing. You'll never feel more joy than you do when you realize you are the one lucky enough to give those kisses.

Opinions expressed by parent contributors are their own.

Watch the video: Having a baby with Down Syndrome (February 2023).

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