Twins are rare but Identical twin girls Down Syndrome diagnosis are beyond rare, like winning the lottery!
Sometimes going back to the beginning is hard. It is hard to relive the initial feelings and emotions that come along with an identical twins Down Syndrome diagnosis. It is hard because once you have moved forward and fallen in love with your precious child, or in Gabby’s case, children, it can be hard to remember your initial thoughts and feelings. Gabby shares a bit with us about the birth of her twin girls, girls who are now vivacious and amazing 3-year-olds.
We learned about the Down Syndrome diagnosis after the birth of our girls.
Our twin girls were born early at 33 weeks so right after I gave birth they were taken away to the NICU. (Neonatal Intensive Care Unit)
Once out of recovery I was able to see them. One of the nurses made a comment to my husband about the girls having certain features. Nurses and Doctors are pretty familiar with the features and I think for the most part are aware right away. Our nurses (who we came to love) did make comments about their features, but we did not receive confirmation of Down Syndrome of our identical twin girls for another week and a half. A Genetics doctor met with us to confirm the suspicions. Both of my girls are identical twins and both have Down Syndrome.
My initial reaction was that of sadness, disbelief but mostly I was scared of the unknown. I knew about babies. I grew up with babies and felt like I was somewhat ready to tackle motherhood but I was not sure how to “tackle” a special baby, let alone two of them.
My first fear was who would take care of my babies if something happened to me? Then everything else followed….
Will they have friends?
Will they ever get married?
Will they go to college?
I had just given birth to twin girls who were both in the NICU. I wasn’t producing enough milk to feed both of them. Thank God for milk donor program.
How am I going to do this by myself?
Will my husband ever accept the girl’s diagnosis?….
I also did not know anyone who had Down Syndrome before my girls were born.
I didn’t worry about telling others the girls’ diagnosis, but I did worry about what their reactions would be after 
telling them. In reality, I was only worried about their reaction because if I saw anything other than love, I was ready to drop them from my life. I no longer want to drop anyone from my life but I do want to educate them.
My babies were born premature and both had heart issues. After giving birth my Olivia stayed in the NICU for 2 months. My Sophia was there for 3 months and came home on oxygen. They both had heart surgery at 8 months old to correct and ASD and VSD. My Sophia had two open heart surgeries one right after the other. They found a hole after her initial surgery. They are doing great now. Other than a common cold, they are both pretty healthy.
My birth experience is where things may sound strange, because, I don’t know what it feels like to be in labor and or give birth.
Because I was carrying twins I was being monitored twice a week. Every Tuesday and Thursday I would make myself to Kaiser for baby monitoring. I would sit back on a recliner chair and have two heart monitors placed on my belly. The Thursday morning I gave birth I was running late to my appointment (contemplated skipping it) and when I sat down on the recliner the excitement started. I was asked by one of the nurses if I “had felt that”? I said, felt what? Evidently, I was having contractions and didn’t know it. They sent me to observation where I prayed and asked God for one more day. I needed to go home and get a couple thing done. Instead, I gave birth via C-Section to my beautiful sweet Olivia Rose (3.1 lbs) and my sweet Sophia Gabrielle (2.1 lbs).
My husband’s initial response is painful to recount as he did not respond very well and had a difficult time accepting the diagnosis. His worries were the same as mine. Who would watch over them in case anything happened to us? Would they ever lead their own independent lives?
He felt like the diagnosis was a punishment. He decided to get some counseling. It took a while but he’s more involved with the girls.
Initially, I tried to keep it all together. I spent all day at the hospital with the girls and would come home at night to sleep and spend time with my hurting husband. Trying to move forward while feeling like your partner is in limbo takes a toll on you. We were not in a good place and decided to separate. A year later we chose to attend marriage counseling and have managed to work through some issues. Every day there are struggles but our girls are such a blessing. We have to remember to put in in God’s hands and trust in Him.
For me, it was pretty early on that I was able to look at my girls and not see Down Syndrome. When I see my kids all I see is a kid. The funny thing is there are times I see a feature here and there where I’m reminded that they were born with Down syndrome. I read the following somewhere. I’m sorry but I don’t remember where. “Their diagnosis does NOT define them”. I have to remind myself to allow my girls to explore and make their own discoveries along with their own mistakes. As a parent, I will always be there to praise when riding their bike or kiss the booboo they got from falling off the bike.
For a long time, I didn’t think I was ever going to have any children. I had had a miscarriage a couple of years back so this pregnancy felt like a blessing. Seeing my girls do just “typical” stuff day in day out I’m reminded that they can do anything, it might take them a little while but they will get there.
Our family and friends were so supportive. My mom left her home to come help us. Since Olivia came home earlier than Sophia from the NICU she would stay with Olivia which in turn allowed me to go back and forth between home and the hospital. I owe her so much.
Life has changed so much, but wow, where do I start? LOL I just made the girls yearly doctors appointments, they are 3 now. We see Audiology, a Pediatrician, and Opthomology appointments all will be done within one week. My life is busy but I’ve learned not to sweat the small stuff. I try to be cool and collective but I do have my moments. My girls love to remove their shoes and socks as soon as we get into the car. I try not to let it get to me. Instead, I say to myself I need to create/invent a sock/shoe that can’t be removed!!! We have met so many people!!! So many random people will approach us and start a conversation. We were also introduced to an organization by the name of Club 21 in Pasadena, CA. They are wonderful, wonderful non profit organization. They offer resources for Parents with babies born with Down syndrome to young Adults born with DS.
Olivia is a sweet sweet baby. She loves to help mommy, whether it’s folding the laundry (by this I mean making a mess, remember don’t sweat the small stuff) sweeping the floors or simply throwing her diaper in the trash. She loves to eat veggie chips and making silly faces.
Sophia is my sweet sweet sassy baby. She will only do things on Sophia time, that means when she’s ready to do it. She loves to play on her iPad while eating veggie chips.
Before my girls were born I would pray that God give them each their own personality. Because they were identical I wanted them to be different. He delivered. Olivia is hugger and Sophia will hug you but will make you work for it.
Both of my girls can express themselves through sign language. Through sign language, they tell me whether they are hungry, want water, want more of something or are done with something. My girls laugh when something is funny and cry when something scares them. Just like any typical child.
If I could offer encouragement to a new mama walking this path, here’s what I would say…
Mama – take it one day at a time. Don’t be too hard on yourself. Love on your baby and enjoy that baby stage because one day she grows up, begins to walk and no longer wants your hand to help get over the step.
And take a mommy day!!
Gabby and her family live in Southern California. Gabby enjoys eating out at new restaurants and especially loves getting dessert. Books are a favorite as well as time with family and especially her girls, Gabby loves God and her twins. Follow their adventures on instagram @twinsmommyluv.
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What a sweet story! Gabby, you are an amazing mom and wife. The way you are so gentle about your husband’s reaction . . . just keep doing what you are doing. Your girls ARE blessings! Happy three years and here’s to so many more!
Thanks for sharing from your heart! It is tough to let people in on the rough side, sometimes, but that is the real deal. Sometimes life isn’t what we planned and we don’t like that. At first. Very interesting also, that you have twins and Both have DS, I believe that is unusual. I, also, have two children with DS, but they are born 13 years apart!