What to Expect When Your Baby is Born with a Disability

Sometimes it seems when you are pregnant that the world is simply brimming with people that are eager to tell you exactly what to expect with your baby.

They load you with brightly colored blankets, impossibly tiny clothes and cheerful, precious hats that will keep your little one warm, fashionable and adorable. Advice is also given. In spades. What to do during birth, what to do after birth. What to expect with breastfeeding, with sleepless nights and baby’s screaming. How to help your body heal after the baby comes. How to help the baby grow, develop, thrive and realize his/her maximum brilliance.

But what happens when your baby isn’t what you expected she would be? What happens when your baby isn’t who everyone said your baby would be?

What happens when you have a baby that is born with a disability?

As a mother with a disability (I am deaf), and as the mother of a child with a disability (my daughter has Down Syndrome), I offer you these 5 kernels of truth as I have experienced them:

1. Your baby is your baby first.
Your baby is always your child first. His disability – whatever it may be – is no more a definition of who he is or will become than the color of his eyes or hue of his skin. He will always have more in common with you than with anyone else, regardless of his disability.

2. Your baby is your baby: you know her best.
When you are not familiar with disability, it’s easy to fall into the trap that experts know best. And sometimes they do – complicated medical procedures, for example. But not everything they say needs to be taken as if it’s the Holy Grail.

When my daughter Moxie was born, all of the experts told me she was losing weight and my milk was not coming in because of her extra chromosome. They told me babies with Down Syndrome have a hard time breastfeeding, her latch was weak and so forth (yet they never checked). I couldn’t understand it because she was chomping down on me – nothing felt weak with her latch! And she was a strong infant; there was absolutely nothing sickly or unhealthy about her. It turned out that some placenta had been left in me. One of the early warning signs of placenta being left in after birth is milk not coming in. But no one thought to check because of Moxie’s Down Syndrome.

The point is: listen to your gut. Do your own homework. Talk to other parents and figure things out for yourself. Beyond being safe with your child and her health, you really are the person who knows her best. Listen to your intuition on what your baby needs!

3. Go out and connect.
Grieving for the child you thought you were going to have is very typical. Being scared and feeling a plethora of negative emotion is completely normal when you have a child with a disability. We live in a world that is not always kind to people with disabilities and we know it.

Reaching out and connecting with other parents is one of the best things you can do. Learning about new communities – both online and in person – will help you in more ways than you can count. It will give you support, ideas, a space to talk. It will be a space that will hear you in ways you need to be heard – especially in the beginning.

4. Begone, Dr. Google!
There is a fine line between understanding your baby’s disability and scaring the daylights out of yourself. Beyond having a grasp on your baby’s disability, it’s advisable to stay away from Googling too much about it until you have gone through your grieving process (if you have one). Get to know your baby first so the information can be taken with perspective.

Too much information, too soon, usually hurts more than it helps.

5. It’s going to be okay.
It’s not what you expected, but it will be okay. In fact, it’s probably going to be way more than okay; it’s going to be wonderful! You are going to fall in love with your baby, and you will marvel that you were ever upset about the disability.

No, really, you will. I promise. So just relax for a while, revel in the newness of your precious little one, delight in her existence.

It’s really going to be just fine.

Meriah Nichols is a third culture kid, former missionary child, deaf Mama to three. She is currently traveling with her family from San Francisco to Argentina, along the Pan American Highway. Follow their trip at With a Little Moxie