January 9, 2013 in Birth Plans, Future, Health Issues, Post-Diagnosis Health, Resources, Siblings

We sometimes have expectant parents awaiting the birth of twins, and one or both babies have Down syndrome.  If you have twins, will you help our expectant parents?  How was your birth plan different?  Did the logistics of a twin birth cause extra complications? Are there any differences in parenting that you see? In what ways is it more difficult?  In what ways is it beneficial?  If you have a blog or website that pertains to twins and Down syndrome, please share.

We will start off suggested resources by mentioning Jen Graf Groneberg’s 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.

Another 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

Let’s hear some more resources, and any personal experience.

Vicki Vila

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8 Responses

  1. Christie says:

    I do have twin boys, fraternal twins–so just one of them was born with Down syndrome.

    I don’t have a lot to offer here. We did not know prenatally Joseph would be born with Down syndrome. My birth plan was no different than if I would have been having two boys with just 46 chromosomes.

    Parenting them has truly, for me, been no different than raising a singleton. We have more doctor appointments for Joseph but nothing out of the ordinary, really.

    Joseph was born with a whole heart and no other health issues. He was diagnosed with seizure disorder at 10 months of age.

    My boys are now three years old and are FABULOUS! They keep me on my toes. I have found it very important to never compare my boys. Each one is his own person. His own personality. His own learning ability. They have developed in sync with one another and they have developed completely out of sync with one another.

    Having one typically developing child and one who develops at a more relaxed pace has been a wonderful blessing for our family. While Jackson is busy rushing at full speed ahead (and then some), Joseph is so content to do it (whatever it may be) in his own time and has taught our family that a slower pace is something to behold.

    Congrats! You are about to embark on an wonderful journey.

  2. My name is Meghan and I am the very proud momma to identical twin boys, Casey and Connor, who both have DS. 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 are feeling now it’s just there is not a better word I am aware of. I have a favor to ask you. If you do nothing else today try to believe the following statement 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 DS. 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- 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 girls 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 DS. 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 DS. 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 (God KNOWS I did this. 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 girls 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.

    Please feel free to message me.You can have my phone number, my email address, my Facebook, whatever. I want you to know you are NOT alone. If you have questions, concerns, fears- I am available.

    Take care,


  3. CBruce says:

    I have a girl/boy set of twins and my son was diagnosed w/ DS. I 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? Are there any groups/websites that anyone is aware of that cater to us parents of multiples whereas one or all have DS? Would be great if there is!

  4. KForness says:

    It sounds like we are in the same situation. I just delivered boy/girl twins a month ago and my son has DS. We were given 1:43 odds and did not do the amnio. And I am also glad we did not. No major health issues so far. How’s it going? Have you joined any groups? We would love to hear from someone a few months ahead of us in this journey.

  5. Darlene says:

    My sister and I are twins. She was born w/Down’s 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. I would like to make a connection with anyone interested in sharing as I have wondered for so many years now, if there is anyone out there like us. I am on Facebook also. My email is: Thank you and God Bless You. Darlene

  6. Sharla says:

    I have fraternal twin with down syndrome. I had a birth diagnosis. I was really nervous about having twins in the first place (I have two girls too) and then when they told me one of my sons had ds I just thought I would never be able to do it. BUT almost 2 years in and it works! My son with ds 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!

  7. Terry Kibelstis says:

    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.

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