Thoughts on a Prenatal Down Syndrome Diagnosis

These last few weeks, I've been introduced to other mamas and families chronicling their Down syndrome "journey" thanks to the crazy - and sometimes small - world that is social media. I've stumbled upon a handful of Instagram accounts and started following along in an attempt to gain some insight as to what our future with Baker will look like should he be born with Down syndrome.

One blog in particular, Cedar's Story, started a blog-hop where people can share about Down syndrome as a means to educate and help others. I wanted to be a part of it but didn't think I had the authority to speak on the subject since we're the new guys on the block. After reading through some posts last week and this mama's account of their prenatal diagnosis, I wanted to jot some things down.

I still don't know much but what I do know so far is that there have been so many emotions. More than I care for, really. Down syndrome and heart defects have been on my mind all day, every day for the last 6 weeks. It's constantly there - I feel like it's all I think about or talk about or blog about. At the same time, we're still learning. It feels all-consuming at the moment because we need a hot minute to adjust to our new reality.

Justin and I have been trying to process our feelings and thoughts and along the way, I've been told numerous times that I'm "handling" this whole situation really well. It may appear that way, and while I'd agree that we've kept a level head so far, I also wanted to share that it hasn't been a walk in the park, either.

I was hesitant to publish a post like this because I don't want to come off as superficial or ungrateful or whatever. And I think, personally, I subconsciously didn't want to fully admit to myself that we are actually dealing with this - that this could be our life. What if I typed out all the feels and he ends up being born without Down syndrome? It's unlikely, given the genetic test results and professional medical opinions we've gotten but still - it's technically a possibility, right?! I find myself going back to those thoughts every once in awhile and have to remind myself of the more realistic outcome.

Either way, I figured we still lived through the day we learned of Baker's heart defect and it's correlation to Down syndrome. I still texted my pediatrician brother seeking medical advice and asking questions and being told not to google things. I still cried - more like sobbed - on the phone to Justin and later my cousin to tell them what the genetic counselor had told me. That all happened, regardless of what any test results say so I wanted to write it down now that I've had a few weeks to process everything.

We had sort of come to terms with Baker's heart defect. It was scary as hell, yes, but after our initial meeting with the cardiologist I was comfortable knowing we had a plan and could start learning what to expect when it came to surgery to fix his heart and make him whole. I was starting to wrap my head around the fact that I'd have to hand my baby over for open heart surgery but I knew we were working with great doctors and that we'd have the best care for him.

The week of May 8th and the days leading up to The Call (dramatic, right?!) from the genetic counselor were hands down the most stressful days of my life. I feel like I'm pretty even keeled most of the time. The kids can test my limits some days but I really try not to let things stress me out but to be dealing with something of this magnitude - serious health issues and lifelong struggles for your little unborn baby - naturally put me over the edge and feeling every emotion imaginable.

The probable Down syndrome diagnosis was devastating. That was my first reaction upon hearing the genetic counselor read the test results. I was crushed.

I was so, so sad. Sad for Baker - that he'd have to live a hard life and face difficulties that other kiddos don't normally have to face. Sad for the girls and how this would change their lives. Sad for Justin who, like a lot of guys I'm sure, have certain hopes and dreams for their son. I was sad for me. This is not what I had planned or what I wanted. I don't want to be a special needs mom. It's makes everything so much harder. It's too much.

I was scared and angry. Could we deal with this and come out on the other side? Why is this happening to us? We already had two perfectly healthy girls and just wanted to add at least one more child to our family. Never in a million years did we think we'd be dealt this card. I was nervous about what others would say or think; wondered how we'd handle the inevitable stares from other people. Would people feel sorry for us? Does this mean our family is complete? We've always wavered between having three and four kids. This isn't really how I wanted end my child-bearing days. At the same time, I never want to go through something like this again. Surprisingly and strangely enough, I don't feel done but I also don't even know what our life will look like 6 months down the road.

I felt guilty. I never thought I "caused" his heart defect or Down syndrome but I still felt guilty knowing it would change things for the girls and our family. I'm worried I won't be able to be there for them 100% of the time or be the type of mom I want to be. Chalk it up to stress and hormones or whatever, but I'm already seeing myself losing my patience faster. I'm quicker to yell and lose my cool and I hate that. I really, really hate that part.

All of this nearly broke me.

We're a few weeks in now and the sadness has lessened. We've learned that Baker will qualify for therapies to enhance his life and that we'll set goals for him just like we do for our other kids. The girls will learn compassion and how to advocate for others. Justin will still have that father-son relationship, it just may look a little different. Then again, maybe not. 

I didn't plan this but when has life ever gone strictly to plan? Do I feel like the "chosen one," someone handpicked by a higher power to raise a child with special needs? No. Not yet at least. Do I feel "blessed" or "lucky?" I'm not sure. But, those are the words I keep hearing when discussing our situation with others so I have to believe that eventually I'll feel those things too.

I realized I was mostly scared of the unknown and started reading and learning about DS instead of shutting down. I always knew we were strong but this has showed us without a doubt that we can handle anything. Instead of feeling nervous I began to feel empowered - knowledge is power after all. I know people will sometimes stare but I don't care what you think! If you stare or say weird things I'll politely call you out and hopefully turn it into a teaching moment. :)

We don't need to make any family planning decisions now. We're getting ahead of ourselves. I have to remember to take one day at a time and should we want to try for a 4th child in the future, we'll be armed with the information we need to make the right decision for our family.

I still feel the mom guilt but moms always deal with that regardless of the situation, right? The girls will still know and feel how much we love them and we'll involve them throughout the learning process. I'm still stressed and short-tempered at times but I'm working on it.

I was nearly broken but feel a little more put together day by day. I still feel all or some of these things most days. Hell, I can even go through all 6 emotions in an hour, I swear, but I also feel love and support and excitement. I feel thankful that we have time to regroup each day and focus on keeping Baker healthy in-utero. I'm grateful to the moms and dads behind the blogs and Insta accounts that I've found recently for posting and sharing their stories because they've helped me so much.

This post is all over the place but I hope it can serve as a resource for another mom or dad someday after they, too, hear these things about their unborn baby. The thing that has helped me most, I think, is getting confirmation that my feelings are normal. It's OK to feel sad and angry and scared. It's totally and completely OK.

I'm excited for the next part. That moment we get to meet him and he magically melts all of our fears away because in the end, it doesn't matter. I may not know what I'm doing or how I'm going to handle everything but I do know that Baker is part of me and part of our family.

I can't wait to meet you, cute boy!


  1. You are a rockstar! I love that you call him a heart warrior in your previous post! There will be ups and downs for sure but your love for him will always be constant!

  2. The guy that fixed our boat. They had another child after the Down Syndrome child and it was normal. But he also said he would not trade in his Down Syndrome child for anything. He said there is just so so much love there.

  3. I am having a hard time typing up my comment because I just loved this post so much. I have never even met you in person but you are quickly becoming one of my favorite mama friends. I so admire your honesty and openness as you and your family have navigated these waters. Feel your feels and know that those who matter don't care and those that care don't matter.

  4. That last paragraph has me in tears- I can not wait for you all to finally meet him and for him to finally meet you!! That will be so, so beautiful.

  5. Love this post :)
    The day my son was born was the first day finding out he has down syndrome. So we had no time to process his diagnosis, so in honesty you're so lucky to have the possibility of knowing and being able to prepare yourself and your family with what's to come.
    My son is now 3 and during these 3 years I find comfort in reading posts like these, knowing that I'm not alone with the diagnosis of down syndrome. I will add, It's the most rewarding experience when he hits those milestones.
    So thank you for the post and enjoy your baby boy :)

    1. Thank you! :) I agree - reading similar stories and having feelings validated has made the biggest difference. That, and the fact that the DS community has blown me away with love and support they've shown towards our family.

  6. You and Justin are going to be the best parents ever to Baker and his big sisters will grow up knowing that there are many types of people in this big beautiful world we live in. None of us know what lies ahead but Braveheart will open a whole new world to you and make all of us better. Prayers and hugs to all of you.

    1. Thank you :) And I'm totally digging the "Braveheart" nickname!

  7. This is powerful and sharing your story is such an important part of processing your feelings; I dont want to down size or think I know what youre going through (because I truly don't) but I will pray for you continuously and support you. As you said, once he's here all that "head noise" will melt away and you can just love on your baby.

  8. I felt the exact same way before Bo was born. I literally cried all day and night for 2 days, then realized I can't do this for 3 more months and went shopping ;) Each day was a roller coaster. I remember saying "I don't want this for us, what's he going to be like". My husband, in his strong calming demeanor, replied "he's ours and we'll always be us". It was that simple for him. Not for me! But I can honestly say that Ds didn't cross my mind during his birth. He looked my oldest daughter, he had so much hair, he was bigger than expected, etc. And today, whenever I get sad about whatever my newest worry is, I look at him and it all goes away. He has an amazing super power that brings people together in love and kindness. And it's truly incredible. I feel so lucky and proud, and you will too. If only I knew then what I know now....

  9. You are so brave for sharing your true feelings. Anyone who says they wouldn't feel the same way is full of it, and I most certainly experienced those same things last year - the anger, the guilt, the sadness...just not to the same extent since our odds were much less. I've said it a million times, but you are going to be a rockstar mama to little Baker. I know it's not what you dreamed of, but he is very lucky to have you and Justin and those two cute big sisters. He's going to do amazing things and YOU are going to help so many others down the road.

  10. I'm so glad that you decided to write this down, and I can totally relate to feeling all the feels in as little as an hour or more, and then starting all over again. On the other side, 6 months into our journey with DS and I can tell you, it's beautiful over here, in fact, you will even have days where you forget that your child has DS. Not in the denial way but in the sense that life is so normal, really it is. Congratulations on your beautiful baby, I cannot wait to see the rest of the story. Also, thank you for sharing the link to CedarsStory and for sharing on the blog hop, you are welcome to share anytime, and I love that you did!

    Dawn (cedar's mom)

  11. LOVED reading this! My daughter is now 5 years old and we didn't know until her birth about T21 or her heart condition. So it is great to read such a different story than ours.

    Like others have said, you already love this boy, but just wait until you hold him. You will love like you have never known.

    Sheila (Dianna is my daughter, my eXtra blessing)

  12. Thank you for sharing so honestly, praying for you guys!

  13. LOVE this post. Thank you for sharing!
    While my situation is obviously not the same, I, too, felt and feel a lot of the same things that you feel. I'll be honest, I didn't want to be a special needs mom. Nobody wants to be told that their child will need extra help. Nobody wants to be told that there is something "wrong" with your child. It is completely normal to feel all the feels that you're feeling.
    I don't know if it's better or worse that you found out now about Baker's DS... better because you can start to plan now for help starting on day 1 (we didn't know that Mason had autism until he was 2 1/2) or worse because you have more time to think about it. I don't feel special. I don't feel amazing. I just feel like a mom who is trying to do the best for her child and I know you will do the exact same for all three of your kids!
    Hugs mama! xo

  14. Just reread this again for the 'umpteenth' time and it's still hard to express myself. You amaze me with wonder and pride. So many unknowns ahead and 'uncharted waters' for you, Justin and your larger extended family(us). But man, look at the support you have! Totally awesome! On a happy, happy note .. can not wait to hold baby boy Baker and to see the love grow in your little family. Love you! XXOO