Defeating the Odds
Just like any new parent with a baby the first year has its ups and downs. Full of nervous gitters, trying to make sure everything is perfect. Well for a parent of a child with Down syndrome, I have learned to let go.
Our journey of raising a child with Down syndrome began at 19 weeks gestation. My doctor had requested I take a panoramic blood screening which would identify the sex of the baby as well as any genetic concerns. Since our family had 2 other pregnancies with no complications I obliged without hesitation. Until less than a week after taking the test the office called letting me know the results were in and that I would be contacted by a genetics counselor… “Genetics Counselor!” The nurse had said many more words detailing my results but all I heard repeatedly was “Genetics Counselor!” I began to panic and searching google about all the possibilities genetic counseling could mean.
I then proceeded to make the call to schedule the counseling session. I remember the counselor asking several family history questions such were there any history of illness etc. Nothing had been found on my maternal/paternal side or my husband’s maternal/paternal side to our knowledge. With tear filled eyes I continued with the session. My husband was on the line since he was on the road for work. We both didn’t understand what was going on. Then the results were read, we were having a son and he showed 99.9% chance of having Trisomy 21 (Down syndrome). The counselor provided us with resources and assured us that we were not alone. I surely felt alone in that moment wondering how life would be with a special needs child and what people would think. I felt guilty of course blaming myself since we didn’t know we were pregnant until 11 weeks.
I reached out to friends and family but most of all I leaned on my faith. Praying hard with my prayer warriors and church family to lead me and guide me along the way. Until we were sent to have our ultrasound to confirm his diagnosis. I had researched key factors in a child with Down syndrome while in utero such as absent nasal bone, extra fluid behind the neck, and sometimes shorter extremities. I was prepared to look at the ultrasound searching for anything. My God-Mom and good friend whom I call my Soul Sister, accompanied me in the ultrasound. Our sonographer, Amanda began our ultrasound as my soul sister held my hand. The sonographer answered my questions as I knew what to look for but as the ultrasound went on she did at times become quiet. We ended our session before the doctor’s review with a prayer. I had never been so moved by a complete stranger’s prayers.
My God-mom and I walked into the doctor’s office to hear the results of the ultrasound which showed that our son would also be born with a heart defect. I didn’t know if I could handle anymore news. Heart defect and the possibilities of a still born child. At that moment I checked out of the room, quickly wrapped my arms around my belly and prayed and prayed. The doctor had to ask the dreaded question… “Before we continue, would you like to continue or terminate this pregnancy?” Without a second thought I uttered the words, “We were chosen for this baby, I am keeping him.” The doctor then informed me that all of my future appointments would need to be transferred to Nemours and that I would need to go to a high risk doctor at Christiana Care.
I was ready to take on the journey. Down syndrome is a journey that I never would have imagined but I am thankful for my pilot. I never thought I’d be so comfortable allowing complete strangers into my home for the therapy sessions; PT, OT, ST and ECE. The strangers later became family as we all watched and witnessed Isaiah learn a new task even after surgery to repair his heart defect. As a parent of a child with Down syndrome, he has taught me to enjoy the moment as it comes. Thinking that you don’t measure up to what everyone else is doing leaves you feeling incomplete and incapable. I learned that being different is what makes the world a better place and not focus so much on the milestones of society but on the individual goals we make ourselves. Isaiah is defeating the odds that were against him to even make it out of my womb and we are now approaching the first year. What a celebration it will be!! We’ve come this far by faith!
About the Author: Latoya, lives in Kent County with her husband, Jean, and their 3 children Jayla 9, Jordyn 5, and Isaiah soon to be 1 in March. She’s currently at SAHM with an accounting background. She’s an only child and a selfless friend. She’s an advocate for CHD Awareness volunteering as the Welcome Coordinator for Mended Little Hearts of Delaware. Latoya will be providing peer to peer support for families with a child dealing with Congenital heart disease or defects.