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.
We are the recently established Ballard family from Pembroke, VA. My name is Katie and my husband’s name is Caleb. We got married in August 2016. Soon after our wedding, we found out that we were expecting a precious bundle of joy. We were a little shocked but mostly ecstatic, we both could not wait to have children. I was 24 years old and my husband 25 years old. My pregnancy was overall very “normal”. It was my first pregnancy so I did not have a lot to compare it to. We found out at 14 weeks gestation that we were having a little boy. My husband was overjoyed to have a boy of his own and had already started talking about teaching him all about baseball, football, and fishing. I was also so excited to have a “mama’s boy”.
My pregnancy was overall very “normal”. It was my first pregnancy so I did not have a lot to compare it to. We found out at 14 weeks gestation that we were having a little boy. My husband was overjoyed to have a boy of his own and had already started talking about teaching him all about baseball, football, and fishing. I was also so excited to have a “mama’s boy”.
I was never offered a nuchal translucency ultrasound in my early weeks of gestation, which at the time I did not know was a routine ultrasound. So, our first big ultrasound was the 20-week anatomy ultrasound. Prior to the ultrasound, I was offered the Alpha Fetal Protein blood test to check for the risk of Down Syndrome and Spina bifida. At first, I was completely against these blood screenings because to me it did not matter the result. But, my mom told me “Katie, if your child does have a life altering medical condition it would be nice to know… only so that you are able to prepare for it.” I remember thinking I am 24 years old the chances of me having a baby with Down Syndrome are slim to none. But, of course, I listened to my mom’s advice. They told me that if I did not hear back from them then everything was fine, but if I received a call then it came back abnormal. After the blood work, the ultrasound was completed and everything checked out perfect. I left the OBGYN’s office that day feeling so relieved.
On December 2nd, 2016 I was in my new job training when my phone started to ring, it was my OBGYN office. My heart literally hit the floor. They left a voicemail for me to call them back because they needed to discuss my recent lab results. After calling the office 24 times I finally got through and the doctor told me that my AFP test came back as an “increased risk” that my baby had Down Syndrome but that often these tests are false positives. On my lunch break I ran back to the OBGYN office to do the next blood test offered that has more accurate results called the NIPT blood screening. At that visit, the lady collecting my blood asked me if I would continue my pregnancy. Without skipping a beat, I said “Of course, it does not matter to me”. I was so scared, just of the unknown. I was told those results would be back in 10-12days.
I waited, and waited, and waited… 10 days passed, then 11 days, and I was starting to worry. After calling my OBGYN office I was told that my blood vial was “lost in a thunderstorm in Knoxville, TN”. So, I had to go back and give more blood and wait another 12 days until I got the results. After 12 long days, my doctor called me and stated that the NIPTs blood screening came back that I had a 1:2 chance that my baby boy had Down syndrome. She immediately referred me to Roanoke Memorial Maternal Fetal Medicine, and by the end of that business day they contacted me for an “emergency” amniocentesis to be performed that evening. I was so unbelievably overwhelmed at this point but I knew that there was risk of complications with an amniocentesis. I needed time to think. They asked if I planned to continue the pregnancy because if there was doubt then I needed to come in very soon. I told them that ultimately the results didn’t matter to me. I did not believe that I wanted the amniocentesis but I was willing to talk to the genetic counselor and have the Level 2 Ultrasound performed.
On December 16th, 2017 my husband, both of our moms, and I went and sat down and talked with the genetic counselor. She basically told me again that my risk was a 1:2 chance that our baby had Down Syndrome and that she recommended the amniocentesis to confirm the blood tests. The Level 2 Ultrasound showed a shortened humerus bone and that he was measuring small for his gestation. The doctors convinced me that having the amniocentesis would be the best option because my prenatal care would change if the amniocentesis was positive. I did the amnio and I waited again.
After a few days, on my way home from work, I got a call from the genetic counselor who said, “Hi Katie, I just wanted to let you know that we got back your results and it did come back positive for Down Syndrome”. At that point, my world stopped spinning. My husband was on nightshift, I was all alone with the second biggest news of our life (the first being that we were expecting). I sat in my car in our driveway and cried for about 20 minutes just asking God “why? was this my purpose in life? Did I do something wrong to deserve this? How was I going to tell my husband this news? This was his first-born son”. I finally gained some composure and called my husband’s work phone, I hated to give him this news at work but I felt that he should be the first person I told. I remember his words so clear, “Well Kate, that is fine…everything is going to be okay.” I could not believe what I had heard. I felt like I should be the one comforting him and he was the one comforting me.
Soon after I received the definite diagnosis of Trisomy 21, I contacted one of my past co-workers who at the time had a 4-year-old boy with Down Syndrome and told her our news. She immediately cried (happy tears) and the first thing she told me was “Congratulations! First and foremost, you are having a baby… the diagnosis is only secondary.” She was and has been the greatest resource for us. She gave me names of specialist that she recommended and she invited us over to meet her son the rid all fears we might have.
We both had our good days and bad days. We decided not to tell anyone about Sutton’s diagnosis for a while only very close family. Given this diagnosis prenatally most of the information you read on the internet is very negative. It tells you how delayed your child will be meeting mostly all milestones and things that your child will probably never be able to do. Our best friends were pregnant at the same time as us with a little boy also. Every time a group of our friends was together people (who were unaware of the diagnosis) would say things like “Oh, this is the future of the Spartan Football team!” or “Is he going to be an All-State baseball catcher like you were back in high school?” With a smile on Caleb’s face he would say “Oh yeah! You know it!” It broke my heart because after everything I had read I felt that this would not be the case at all. I felt at fault for giving Caleb a baby boy who wouldn’t be the star athlete he had always dreamt of having.
Due to the positive amniocentesis, I was followed more closely by the doctors and my care was transferred to a bigger hospital with a NICU, if needed. I felt better about delivering him at a hospital with more resources. I had Non-Stress tests twice a week until I delivered him due to the increased chance that he could be stillborn. I also had multiple ultrasounds at Maternal Fetal Medicine just to watch Sutton’s growth and development.
After about 2 months my husband and I had finally accepted the diagnosis. We felt that we were chosen for this journey and we were fully embracing it. I felt that our relationship was the strongest it had ever been. On March 21st, World Down Syndrome Day, we made our announcement to everyone about our sweet Sutton being prenatally diagnosed with Down Syndrome. We only received positive responses and we felt so overwhelmed with love and support from our family, friends, and community.
At my routine OBGYN appointment, my blood pressure was steadily rising so on April 6th they sent me over to the hospital to be induced. I labored for 14 hours, and everything went very smoothly. On April 7th, 2017 at 5:20am I delivered our sweet Sutton Joshua, 5 pounds 11 ounces and 18 inches long. He was laid on my chest and I said, “hey baby” and his eyes fixated on mine and his crying stopped. In the moment, again my world stopped spinning but this time in a completely different context. My husband and I could not hold back the tears. He had my blue eyes and blonde hair, he had his daddy’s nose and facial expressions. The diagnosis that I was given months before, which was the only thing I had associated him with, had completely left my mind. All I could do was stare at this little miracle that we had made. He was not Down syndrome. He was Sutton, our blonde haired, blue eyed baby. I felt that it was a sign from God that our sweet Sutton had 47 chromosomes and was born on 4/7, we were meant for this journey!
I personally feel very blessed that I was given this diagnosis prenatally because it did allow me the time to prepare both mentally and physically. If I would have gotten this diagnosis at birth it would not have changed my love for Sutton at all but I do feel that the diagnosis at birth would have mentally taken me away from Sutton during his first weeks of life because I would have been trying to process all the information as well as my own emotions. We were able to cope with our feelings prior to his birth, we had done all of our research, we talked with other moms who gave us so much inspiration and insight, and we were able to just enjoy our brand-new baby boy.
Sutton is now 12 weeks old. He has such a personality already and we love to watch how he grows each day. He currently participates in Early Intervention once a month. Sutton hates tummy time which is the reason that he has been able to roll over from belly to back since 6 weeks old! He is right where he should be developmentally. We work on neck strength every day to hopefully reach our 4-6 month goal which is sitting. Sutton loves to be held and snuggled, especially by his daddy. He is such a good eater and his favorite time of day is bath time. We are so excited to be on this journey with the most amazing tour guide.
Update:
Sutton will be 16 months old next week! Time truly does fly when your having fun!
Medically, Sutton is currently followed by a pediatrician, gastroenterologist (for a non DS related milk protein allergy), and an optometrist! He is SO cute in his glasses, but refuses to wear them. We are still receiving Early Intervention services through our educator twice monthly and will continue until age 3.
Sutton can say “mama”, “dada”, and “baba. He can sign please, thank you, more, bye bye, and he blows the sweetest kisses (to everyone he sees). He crawls like he is in the Daytona 500 and is SO close to being able to walk but just hasn’t gotten the confidence quite yet. He will get there in his own time!
The biggest update I want to give is that in no way has Sutton stopped or altered the “life we thought we would have”, which was my biggest fear when we received our prenatal diagnosis. At 16 months old here is a little glimpse of what Sutton has been up to. He has been hiking, trick or treating, in atleast 10 professional photo sessions, shopping, fishing, swimming in the lake, golfing, to the beach, to a college basketball game, got a hair cut, raised chickens, had many play dates, attended multiple weddings, cruised Toys-R-Us before they closed, watched fireworks, went to the zoo, was licked by a buffalo, kissed his Great Great Grandmother, participated in his first buddy walk, went to the movie theatre, graduated level 1 swim lessons, has been to many high school football, basketball, and baseball games, went sledding, rode a pony, sat on Santa’s lap, picked a pumpkin at the pumpkin patch, and has made some of the BEST friends along the way! He has no limits! We have loved watching Sutton adventure and have so many new experiences! We seriously would not change a thing, not even a single chromosome.
We are absolutely head of hills in love with our boy and each day we fall harder and harder! He has filled a place in our hearts that we never knew was empty. We have learned to live in the moment, to love unconditionally, and to advocate for him with all our might. We are forever thankful and blessed God chose us to be his parents. Life is truly better with him! <3
Love,
Caleb, Katie, & Sutton
Katie is a 25-year-old registered nurse (RN) married to Caleb, the love of her life, since August 2016. Katie, Caleb and Sutton live in VA. The family loves to be outdoors, go hiking, and kayaking. Sutton is now 12 weeks old and his parents feel so unbelievably blessed that God chose them to be his parents. He is the light of their life, and they love to be advocates and speak out to show others that there is Nothing Down About it! Follow Katie and Sutton on Instagram @sweet.on.sutton.
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