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Mum and Dad

What doctors should tell you about having a baby with Down syndrome

What doctors should tell you about having a baby with Down syndrome


Whitney Barthel

posted in Parenting

My baby will never be able to ride a bike, read a book, or leave home. How will I love this child that will surely always be a burden?

These are some of the thoughts that haunt me now, seven years after receiving my son’s prenatal diagnosis of Down syndrome. Now, with my son in my arms, I am embarrassed and ashamed of these nasty — far from the truth — ideas that ran through my mind.

Down syndrome

So why do I share them? I share them because they are the thoughts of so many parents like me who were given a diagnosis. And with that diagnosis, no hope.

special needs mom Down syndrome

You see, parents like me are usually (usually, not always) sat down after receiving a diagnosis from doctors and genetic counselors, and given the worst-case scenario. The experts say things like “heart condition, mental and physical retardation, therapies, quality of life, and shortened life expectancy.”

You think, “My God, how am I going to do this?”

The sad truth is by trying to prepare us for what could go wrong, healthcare providers forget to tell us what could go right.

Down syndrome brothers

Maybe what needs to be said is this, “Congratulations on your baby boy/girl! Your test does confirm he/she most likely does have Down syndrome. Now before I tell you some of the health concerns we will need to look out for, I am going to tell you this. Your child will still be a child. They will still have the ability to laugh and play and be naughty. He/she will have features from you and your spouse. When you look at him/her you won’t see Down syndrome, but your wife’s skinny legs, or your husband’s impossibly straight hair. And from the parents I know who have lost their child with Down syndrome in utero, during childbirth, or not long enough after, living without their child is much more difficult than being blessed enough to live with them.”

Down syndrome

What doctors don’t tell you is, along with the heartache and frustration that can go along with raising a child with special needs, you will also get to experience joy, grace, and happiness that only parents on this very journey will ever get to experience.

What do you wish doctors would have told you while receiving a prenatal diagnosis?

See also:
I don’t have to raise my child with Down syndrome, I get to
My baby with Down syndrome taught me joy I had never known
If I could writer a letter to my pre-Down syndrome self, here’s what I’d say
Video: Meet the couple who have NINE kids with Down syndrome


Images by Whitney Barthel

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