Real life Down Syndrome Awareness
For some reason, the misinformation is still prevelant that Down Syndrome only occurs in older mothers. After running this site for awhile, I am here to tell you that the vast majority of mothers who have a diagnosis presented to them are falling into the “young mom down syndrome diagnosis” category. Katie was one of those moms, never expecting a Down syndrome diagnosis this young mom has now embraced it and her beautiful son, Sutton.
After years of struggling to have a baby, my husband and I found out we were pregnant – with TWINS! We already had a son that we loved more than life itself, but wanted to give him a brother or sister, and he was getting two! We were overjoyed with the news and couldn’t wait to share our news with everyone we knew!!!
We decided to find out the gender of the babies so we could prepare for two. Believing we were having boys, it came a quite a shock when the ultrasound tech announced, “Baby A is a girl. Baby B is a girl.” We were surprised, but excited as well. Sex doesn’t matter as long as the babies were healthy, right? Well, a few months later, the “healthy” aspect of our babies came into question: Baby B may have Down Syndrome.
It was like a bomb had dropped. Shock, fear, anger, more emotions than I can explain hit me, and then I just felt numb.
Are you sure? What makes you believe this?
Unfortunately, the doctor at the ultrasound office didn’t have a very good bedside manner, she told me in a very monotone voice, was cold and unfeeling when I started to cry, and really showed no emotion in delivering this life-altering news. She only told me that our chances were about 10% that she would have Down Syndrome and then left the room.
Numb and unsure of what to do, how to think or feel, I somehow made it to my car to call my husband. His emotions exploded as well. We cried together, fearing the worst. I think any parent in this situation would probably feel the same.
As time progressed we began to deal with the possibility. We researched all we could about Down syndrome, finding unbelievable statistics about abortion rates of fetuses with positive Down syndrome prenatal testing.
How could people do this? These babies are still children. They have the right to life and to be loved.
These statistics anger us and made it even clearer that our daughter was a precious gift that we would cherish, no matter her diagnosis.
The time finally came for delivery. Although neither one of us wanted to admit it, we were pretty sure our daughter had DS. At delivery, it was obvious that Baby B did indeed have Down Syndrome. Numb. That’s all we felt. But then again, she was crying, she wasn’t rushed to the NICU. Those were all good things.
Because they were twins, the girls were taken to be examined and I was sent to recovery. Unfortunately, there wasn’t a room available so I had to stay in that uncomfortable bed for over 4 hours. At one point my husband left and went to visit family and the girls. I awoke to my OB/GYN sitting at my bedside with tears in his eyes. He felt bad that he didn’t know 100% the B had DS, he didn’t understand how I could take this all so well. He wasn’t being rude, he was being real. Although he is a doctor, he has feelings, he was disappointed and had wanted everything to work out just like we did.
I guess it was at that time that I realized that this did work out, maybe not the way we had intended or hoped or prayed for, but in the way it was supposed to. Hollie (Baby B) was a gift that we were blessed with.
Hollie remained in the hospital for two weeks to learn how to eat properly and to keep her temp up, but her heart, lungs, kidneys, etc
were all good. What a blessing!
Hollie has been in the hospital twice since then – once for RSV when she was about 4 months old and once for dehydration after the stomach flu when she was about 4. We are lucky!
Hollie has been going to school since she was about 4 months old. She began with an early intervention program, transitioned to preschool at 3, and will begin kindergarten in the fall. We have been fortunate to have wonderful and amazing teachers, aides, and therapists so far and I expect her regular school to be the same. I am also a teacher at the school she will attend, so I get to keep an eye on herJ I also know all of the teachers, so I will be able to be in constant contact with them to make sure she is growing and learning. She will have a 1 on 1 aide to begin the year. This is part time as the preschool teachers and we felt she could do some of the classroom activities without an aide, but we will revisit this should it be an issue. (Remember, an IEP is an ever changing document!!!)
So as we prepare for kindergarten for Hollie and her sister, I am excited and nervous. I am very determined to make the regular public school work for her, and so are her teachers. I do not plan to send her to a unit unless absolutely necessary! She has so many kids that know her, love her, and help her, that I truly believe she can do this!!!
The future is unknown, but I really believe her life is going to be amazing! Down syndrome will NOT keep her down or from doing anything she wants! We will make sure of that!
Robyn and her husband Brian live in a very small town in Ohio with their three children, Carson and twins Addison and Hollie. Robyn is fortunate enough to teach in the school district where her children attend school which she feels probably helps (and maybe hurts a little) when it comes to dealing with special ed needs.
Check out these other twin stories:
Adult twins, one with Down Syndrome,
Twins and a surprise Down Syndrome Diagnosis,
Two beautiful babies, one diagnosis
Twins: Double the Blessing (one of each kind)
There are many moms who will learn about a Down Syndrome diagnosis at birth, that is how our family learned about it too. Some of us will go on to advocate fiercely in hopes of easing the transition for those moms who come after us, when they feel shell-shocked, when they are scared. Andrea is just one of those amazing mamas hoping to help others, encourage moms and show the world that Down Syndrome is not as scary as we fear. She has created the most beautiful and touching video in the hopes that new families will see it and find immense encouragement. Her son Case, the impetus for her trailblazing is the light of her world. Here’s Andrea’s story and her brilliant video, please share it so that we can circulate the positive side of Down Syndrome.
We have shared so many stories on the blog since it began 2 years ago, but this is the first time we have had the privilege of sharing a story of triplets. Meet three of the cutest triplets ever, and find out how their family learned that one of them had a little extra. Triplets and a down syndrome diagnosis.
Hello, my name is Shawn and I am the mother of one-year-old triplets,
Before becoming a mom, I worked in Marketing and enjoyed traveling, backpack camping and hiking with my husband, Jay. God has blessed me with three beautiful children and has given me a new path to walk on! This is my journey from struggling with fertility, a very complicated triplet pregnancy, an unexpected Down syndrome diagnosis and raising three very different tiny humans.
January 29, 2018 my life was turned upside down; not because I had given birth to three babies, I was expecting three babies, but one of my triplets was suspected to have Trisomy 21, Down syndrome. My C-section delivery was incredible and a blur. There were over 20 people in the operating room, consisting of my OB/MFM, her residents and nurses, the head Neonatologist and three NICU teams.
Having a high-risk triplet pregnancy, I was monitored much more closely than a singleton pregnancy; anatomy scans and heart monitoring every two weeks and at 28 weeks, I was placed on medical bed rest, where I would spend 40 days until they were born. There were never any suspicions or indicators of Down syndrome, even with all the extra scans, monitoring and testing. In fact, during the last ultrasound I received, my doctor commented how “perfect” Coldon’s aortic arch was. Looking back on the day they were born, receiving Coldon’s diagnosis post birth was a blessing. A pre-birth diagnosis would have only increased my stress during an already stressful pregnancy.
I vividly remember, as the doctors were completing my procedure, the Neonatologist coming to my side and asking if we had been informed Coldon might have Trisomy 21. I didn’t even know what Trisomy 21 was. He further explained Coldon had some soft indicators of Down syndrome; the gap between his toes, the single crease on his hands and his hypotonic state.
This isn’t the way I would have preferred to learn of Coldon’s diagnosis. but Jay later told me he knew something was wrong when the nurses were pulling Coldon’s legs together and they would flop back down. The doctor knew Jay was aware and concerned, so he decided to talk to us then instead of waiting for the office and closed doors. Another part of our diagnosis I didn’t appreciate was my OB/MFM coming to my room two days later and apologizing to us because she didn’t recognize any indicators and we weren’t informed before he was born. We immediately stopped her and asked why she was apologizing? We explained we wouldn’t have done anything any differently had we known. Yes, it would have been nice to have been a little more prepared for Coldon’s diagnosis, but NEVER apologize to someone after they have just given birth to a child, period; especially if the child has a disability.
The diagnosis didn’t resonate with me until well after the delivery was complete. There was so much going on and all I was able to focus on was the fact I had three babies in the NICU. At the time, I was just thankful my babies were healthy and I was no longer pregnant, but Jay experienced all the emotions of Coldon’s diagnosis that day. I actually cannot wait to write his diagnosis story, as it is very different from mine. He recently told me, the day the babies were born, he went to his family in the waiting area and started crying. He was scared of Coldon’s diagnosis, because he didn’t know what to expect and we weren’t prepared.
When my parents arrived to the hospital, I told them the doctors thought Coldon had Down syndrome. I’m not sure if I was in shock or still heavily medicated, but it was the most apathetic statement I’ve made about his diagnosis. There was absolutely no emotion behind it. I was afraid of telling my dad, as I was worried he wouldn’t know how to connect with him, because he was “different”. In the three weeks the babies were in the NICU, we had plenty of driving time to reflect on our lives. It didn’t take us long to come to the realization of how lucky we were to have been chosen. We had three beautiful, healthy babies and to have a child with a special need; God chose us!
Coldon’s first days were filled with a myriad of tests, including the genetics test to confirm his diagnosis, an Echocardiogram, EKG and lung x-ray. Medical staff came to Jay and I with what felt like a never-ending amount of questions and information; I don’t remember when the tests were completed, but when the team of doctors and residents gave us the results of the genetics test, they made sure we knew Coldon had a healthy heart and how his aortic arch was “textbook perfect.” I thought, ok that’s great; every new mom wants to know their baby has 10 fingers, 10 toes and healthy heart, right? What was going through my mind was how Coldon had the cutest feet ever and he was just a little more floppy than Ella and Greyson. Well, little did I understand how incredibly important a healthy heart is for a child with Down syndrome.
Jay and I chose to tell our closet friends and family about the diagnosis, but we waited until after Coldon came home from the hospital to tell the world. We needed time to digest the information, to wrap our minds around his diagnosis and we needed time by ourselves with Coldon, without hundreds of questions or having to explain. I cried the day we chose to tell everyone, Coldon was diagnosed with Down syndrome. The amount of love and support everyone showed us was overwhelming. We were expecting questions and everyone’s opinions, but instead we received love and praise!
Coldon spent 49 days in the NICU, because he struggled with feeding from a bottle. Once Coldon finally drank 16 bottles in a 48-hour period he was able to come home! Our family was home and complete. However, this was when the reality of Coldon’s diagnosis began to affect us.
Coldon’s greatest challenge has been feeding difficulties and when he came home, I finally broke. His feeding challenges have been the hardest for me to accept. Many days after an exhausting battle with his G-tube, I found myself asking God, “Why does he have Down syndrome?” Over time, I have learned how to manage the stress and anxiety I feel from these battles; now I refer to these days as “Down syndrome” days. Down syndrome is why he has so much trouble with liquids, why he has been so sensitive about the G-tube and his stoma. Coldon is incredibly driven, calm and resilient; it isn’t him causing these struggles. Jay likes to say “Coldon has Down syndrome, but the Down syndrome doesn’t have Coldon”
My initial feelings about Coldon’s diagnosis were and still are positive. There are days when I hate Down syndrome, because it changes who my little boy is. However, I have had a calm peace and sense of comfort about his diagnosis. This past year has been a blur and I have had very little time to think about Coldon having Down syndrome or a need to think about it. As a triplet mom, we tend to focus on keeping them fed, healthy and alive; can’t sweat the small stuff! Well, as the triplets are getting older, I’m slowly gaining time and as Coldon develops into a toddler, he is starting to exhibit behavioral characteristics of DS, so now I have the need to think about it.
Some of the first things I thought about when we received his diagnosis were about his future. Will he be able to have a girlfriend, get married? What about children, will he be able to have children one day? I’ve thought about these questions to the point of writing them down and doing some research. I started reading other peoples stories, and to answer my own questions, Coldon most likely will not be able to have children, but if it is God’s choice for him and if wants to have children, I will support him. I will support Coldon if and when he decides to date and I will support him if and when he marries. Surprisingly, the “what if” questions didn’t come to my mind until later; I was only worried Coldon wasn’t going to be able to have a girlfriend.
I believe the reason I have not been as affected by Coldon’s diagnosis, is I have chosen not to be. I don’t question God’s work. Through our ups and downs and my faith in him, I know why Coldon has Down syndrome. God has a purpose for us and Down syndrome is part of that purpose and I know God gave me Coldon, because he made me to be the one person in the world who could handle Coldon and his diagnosis.
Through this diagnosis, I found God’s purpose for me; something I’ve struggled with for years and it took triplets and Down syndrome to find the answer. I have always been a passionate person and constantly searching for something to “fight” for. Now I have an incredible platform to advocate for and an amazing and unique story to share.
My life has changed drastically in the past two years. If you would have asked me two years ago, where did I see myself in the future, I would have never dreamed I would be a stay at home mom, raising triplets and discovering a passion for Down syndrome advocacy. I have been blessed with the opportunity to sit on the board of a local Down syndrome organization in my community and through social media have connected with some amazing families in the DS community! My mission as a mom and an advocate is to support other moms. I am about one week away from launching my blog, Coldon’s Krewe, where I am able to have a resource for the information I’m ready to share.
Triplets are demanding; I’m tired and exhausted, both mentally and physically. Down syndrome can be difficult, scary and frustrating, but having triplets and DS has been the most rewarding and enriching life experience I could ever imagine and I am so thankful God chose me! Triplets and Down syndrome has changed my life in so many ways and I cannot wait to see what my future holds and what God’s plan has in store for my family!
Shawn is the mother of one-year-old triplets,
The Family calls Louisiana home and you can follow their journey on Instagram @downwithcoldonandhiskrewe and on their blog www.coldonskrewe.com
