Prenatal Diagnosis of Down Syndrome

Dear pregnant mom who received a prenatal diagnosis of Down syndrome,

I’m talking to you… The mom who was devastated by the news that your baby has Down syndrome. I’m not talking to the mom who was barely fazed, though you are welcome to read on (and maybe you can give me some tips on how you keep so calm and cool.) I’m talking to the mom who was literally brought to her knees, thinking her life was over, that she might never bond with her child, that she would never feel happy again. The mom who cried for months, gut-wrenching sobs that wracked her body, sadness only hidden when her first-born was looking on (and probably not hidden very well). Yeah, you. I want to say this as nicely as I can… get over it. I mean that in the best way possible, and I feel like I am totally qualified to say this because I WAS that mom.

Ok, the grief and the fear are all part of the process, and I’m thinking there’s no way to just “mind over matter” your way through this. And, maybe it’s insensitive of me to even say that. But if I could go back in time I would give my pregnant self a great big hug (if I could fit my arms around her…my belly was pretty epic, though not as epic as it was with my youngest!), and I’d tell her it’s going to be totally fine. Those BTDT (been-there-done-that) moms who are telling you that you will absolutely love your child just as much as you love your typical child, that your life will be full of joy, that a Down syndrome diagnosis isn’t the end of the world… they’re right! So, I’d give myself a hug, and then maybe slap myself across the face. Ok, not really. But you know, something to jolt myself out of that self-pity, the anxiety, the stress, the sadness. In hindsight, I wish I had relaxed, enjoyed my pregnancy, celebrated the upcoming birth, and realized how very much love and joy my new daughter would bring to our family. Yes, there are challenges, and the Down syndrome does continue to be a source of fear and some sadness when I am too focused on the “what ifs” and the future unknowns. However, the grief and fear that I felt while pregnant is nothing compared to the love I feel for my daughter. I look back and feel utterly ridiculous. So, to the new pregnant mom, I don’t want to belittle your feelings. I do, however, want to give you hope.

I want to share a private moment with you that I hope will do that. The other night I was holding Lily, my 4 year old who has Down syndrome, cradled in my arms as she likes me to “hold her like a baby” before bedtime. I was feeling overwhelmed with how very much I love her and how very much I still struggle with feelings of guilt over my reaction to the prenatal diagnosis. When I said above that I was a mess, I’m not exaggerating. If anything, I’m downplaying it because words cannot adequately describe how devastated I felt. I said to her, “When you were in my tummy I was really scared because I didn’t know if I could be a good mommy to you.” To be honest, I was tearing up a little bit. She reached up and held my face between her adorable little hands and so sweetly said, “I love you mommy.” Then she gently tapped me on the tip of my nose with her index finger and said, “boop!” in her silly voice, and we both started giggling.

Many pregnant moms with a prenatal diagnosis worry about the future and some go so far as to consider terminating the pregnancy because they worry about whether they’ll be around in the future to protect their child. And to those moms I would say that those are valid concerns. But you are around now, and you can keep your child safe now. None of us have a guarantee of the future. None of our kids (even those born without an extra chromosome) have a guarantee of lifelong health and future independence. All we can do is care for our children through every stage. Your child right now is in the stage of not-yet-born, but is no less deserving of a chance at life and no less in need of being kept safe. If you abort this child, know that you are doing so for you, not for your child. I know that’s harsh, and I’m sorry, but I’m not going to pull any punches here. That wouldn’t be fair to you or your baby. If you’ve made up your mind to do that, at least understand the truth first and have the intellectual honesty to know that you are doing so based entirely on your fears, and not based on actual data.

Most people with Down syndrome are much happier and more satisfied with their life than the typical population. In fact, in research led by Dr. Brian Skotko, 99% of individuals with Down syndrome reported being happy with their life, 97% like who they are, and 96% like how they look. The majority of families surveyed reported a more positive outlook on life, and the vast majority of siblings said they felt proud of their sibling with Down syndrome and confident they were better people because of them. And honestly if you abort your baby you will likely be missing out on indescribable love and joy. I know it’s scary. I was once in your position and took the prenatal diagnosis about as hard as one can, and I too thought I couldn’t possibly handle it.

What I had to realize and what you do too is whether you have a prenatal diagnosis or not, no pregnancy or child comes with any guarantees.  Those of us with prenatal diagnoses simply leave our “pregnancy bubble of ignorance” sooner than most. Others might come out of the bubble when their 28 year old unemployed son is sleeping in their basement, playing video games and raiding the refrigerator 😉 Ok, just being a little silly there. The point is we all have lofty dreams for our kids, but it’s important to remember that those are OUR dreams. The sooner we let go of that and embrace our child for who they are, the happier we will be. While no pregnancy comes with a guarantee of health or future independence, they all come with love. That might sound cliche, but I have yet to meet a mom who doesn’t love her child. I’ve met plenty of moms who doubt their abilities or feel they aren’t good enough. While every mom who has a child with Down syndrome is at a different stage in their journey, like all of my typical mom friends, they all share in common a love for their kids that is beyond words.

After your baby arrives, although your worries and fears won’t go away, they will pale in comparison to how fiercely you will love your child. Don’t let fear win. Your child needs you NOW. You can sort out the future later.

**Due to recent experience with stolen images, I have removed personal photos and videos.**