We sometimes have expectant parents awaiting the birth of twins, and one or both babies have Down syndrome. While some parents may feel alone on that journey at first, there are actually many parents and siblings who have shared their stories about having twins or being a twin where one or both have Down syndrome.
See also: Preparing Your Other Children chapter in our book, “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome.”
We will start off suggested resources by mentioning Jen Graf Groneberg’s book, Roadmap to Holland. Jen gave birth to twin boys, one with Down syndrome, and wrote of her early experiences.
Another resource is a blog by Eric Waksmunski, dad to twin boys with Down syndrome.
In addition, guest post by Vicki Vila on Amy Julia Becker’s “Thin Places” blog gives a unique and insightful perspective about fraternal twins where one has Down syndrome and the other does not. Vicki Vila’s blog can be found at www.modernmessy.wordpress.com.
Other articles about twins include the following:
Twins with Down syndrome — our experiences
How often are children with Down syndrome twins? by Sue Buckley
Below are stories from a twin sibling and other parents who have twins where they specifically address common issues, such as birth plan changes, logistics of a twin birth and possible complications, potential differences in parenting that you see, and benefits and challenges of twins.
Reflections from parents about raising twins when one or both have Down syndrome:
From Meghan who has two identical twin boys with Down syndrome:
My name is Meghan and I am the very proud momma to identical twin boys, Casey and Connor, who both have Down syndrome. We did not get a diagnosis prenatally, and I remember so very well the feelings I had when the neonatologist looked at me and said, “We strongly suspect they both have Down syndrome.” I will never forget that feeling as long as I live. It was difficult to breathe, my heart hurt, my very being was crushed. It felt like I needed to be wrapped in bandages to hold together. I was beyond devastated. Quite honestly, I felt like the twins I had imagined and prayed for and loved for 9 months were dead. I mourned “those” twins and realized that I still had “my” twins — I had two very real — completely adorable, absolutely perfect babies that needed me. I took one look at my sons, and I realized with very concrete certainty that it didn’t matter to me if they had 10 heads and neon green skin. They were mine, and I loved them, and I would spend every moment of my life making sure they were happy.
I know this is hard. Actually “hard” is such a crap word for what you might be feeling now. It’s just there is not a better word I am aware of, but I want you to know with 100% certainty — you are so blessed.
There are challenges ahead of you. I know nothing about the double bubble as my guys have no health issues, but I know Down syndrome. I know that for every new skill they will work harder than other kids. But I also know that when they master something new, there is this incredible feeling of wonder that you will experience. I will never forget the first time Connor sat up from a laying position by himself. It was December 4th, 2010, on his first birthday. I had turned my back to finish a sign for the yard, and I turned around and he was sitting up, and he looked so proud. I screamed with joy and startled him so that he fell over. I cried. We hugged. Great day. Casey mastered the same skill 3 days later, and I had the same reaction. My point is — your twins will do everything that other kids do — they will just do it a little slower, and you get to savor it and enjoy it and be thrilled. Sometimes I feel lucky that my boys have Down syndrome. My friends with babies the same age miss out on so much. Their kids just did everything so quickly they never got to enjoy the new stuff. With Casey and Connor I get to watch them learn something, master it, and then move on. When I post it on Facebook, my friends and family share that joy right along with me.
My life is normal. Well, as normal as life can be with twin toddler boys. There are honestly times I don’t even think about the Down syndrome. I spend more time trying to get them to eat something other than graham crackers and goldfish than I do thinking that they are different.
Right now you have a lot to think through. You are facing a future that you are not certain about with medical issues on top of it. I know that you are dealing with a ton. You might cry a million more tears, you might get mad and want to yell, you may be depressed, you may feel like I did and feel like you need to mourn the loss of the girls you have been dreaming about and planning for. (In my dreams I had one football star and one baseball star and they were both going to get full ride scholarships and give me lots of grandbabies — I dream big!) You take this time to feel what you feel. Nothing you feel is wrong. Nothing you think is wrong. Just know that once your twins get here, you will fall in love with them. You will look at their little almond shaped eyes or their little singly creased palms and stare in wonder and think, “How did I get so lucky?” You will realize more joy than you have ever known. Life with extra chromosomes is more beautiful than I would have ever thought and I am a far better person because I got chosen for this journey.
From Bruce who has a girl/boy set of twins where the son has Down syndrome:
I have a girl/boy set of twins and my son was diagnosed with Down syndrome. We did not have the amnio, so was unaware. And am glad I opted not to. He is a joy, and they truly compliment each other. It has not been easy, but what total child birth, upbringing, etc. is?
From Darlene who has a fraternal twin sister with Down syndrome:
My sister and I are twins. She was born with Down Syndrome. We are 47 working on 48 in September. Just wanted to reassure you how special it is. She is such a blessing to me. My life is complete with her. I have learned so very much from her, and I thank God everyday for sending her with me. Or – for sending me with her.
From Sharla who has fraternal twin boys, including one with Down syndrome:
I have fraternal twin boys … one with Down syndrome. I had a birth diagnosis. I was really nervous about having twins in the first place (I have two girls too). Then when they told me one of my sons had Down syndrome, I just thought I would never be able to do it. But almost 2 years in, and it works! My son with Down syndrome is the love of my life. He is such an easy going boy. His twin is a fireball, so they compliment each other so well. And they adore each other. I love having twins much to my surprise!
From Terry who has identical twin girls with Down syndrome and heart defects:
My identical twin daughters, Susan and Meredith, are turning two today!
We had an amnio after learning that both babies had an AVSD, a congenital heart defect with a strong probability that there was also DS. These are the hard days. Knowing – letting go of that hope that maybe the girls would not also have this – was so hard. Add to that all the prenatal twin stuff and the heart condition.
We didn’t know then how wonderful and amazing our lives would be because of this. What we thought was the loss of our lives as we knew them has instead transformed and changed our lives. I never knew how much otherness was out there, how much love is in this world, how much kindness and compassion and strength exist among my family, my friends, and so many people that I have met through our girls.
Please know that we were there with you at this moment. We chose to continue because we knew that some of the most rewarding expereinces in our lives have been the most challenging ones. Our girls are our proof – what we saw as the toughest challenge is our best reward, only two years in. We have grown and changed and loved so much more. It is my hope for you, too.