How the Stories of Other Parents Helped Me After My Daughter's Down Syndrome Diagnosis
As my two daughters and I walked happily to the ultrasound room, we did not have a clue how our lives were about to change forever. At the time, my biggest concern was that the technician would divulge the sex of our little one, as we wanted it to be a surprise at birth!
The technician was a woman of few words, and anything but cheerful. I introduced myself and my two daughters and explained this was their first time seeing a sonogram. They were very excited to see a glimpse of their little brother or sister! We still received very few words from the technician until she frantically said, “I need to go see if a doctor is still here. I see something that isn’t right!” She then walked out of the room, leaving my jelly-covered belly exposed.
My daughters immediately asked if everything was all right. Although my heart was pounding, I reassured them that it was. When the technician came back in, she told me, without a doctor present, that she only saw three out of the four chambers of my baby’s heart and that he/she may have Down syndrome. I was in complete shock and thought there must be some mistake. I was in protective mode for my two daughters standing beside me while trying to process the words I just heard. How could a person begin to make an unauthorized diagnosis in such a cold and heartless manner? This was supposed to be a happy memory that my daughters and I were to share together for the rest of our lives.
I reassured them, but inside I felt confused. I didn’t know exactly what Down syndrome was, but how the news was delivered didn’t make me feel hopeful! All I knew was that I wanted my unborn baby to be healthy, and I wanted to continue to enjoy my pregnancy like I did with my other two children. My heart was incredibly heavy from so many unknowns.
A few weeks later, a specialist told me the possible prognosis. I may miscarry (which I have no history of); if our unborn child lives, the baby would go to the NICU; or our baby would have to be flown to Atlanta for emergency heart surgery. The recommendation based on one ultrasound alone was to terminate the life of our child. Just four hours later and after another test, I was told our baby did indeed have all four chambers of the heart, but a defect was present. I was also told countless times that our baby’s femur bones measured smaller than average. I became very defensive and agitated after repeated recommendations to abort our baby. Was this life not worth living because of Down syndrome? Was this life not worth a chance because of a heart defect or because her femur bones measured smaller than average?
In a protective, defensive mode, I told the specialists not to mention abortion again and to not give me any more negative “what if” scenarios. I only wanted to know the facts, yearned for any positive sides of Down syndrome, and needed to be reassured of the love and beauty this child would bring to our family and others. I believe God makes no mistakes, but I needed to be reminded of that.
I needed to know our unborn child would be the beautiful baby I had imagined, that she could do anything she put her mind to! I desperately needed to find families and stories of beautiful babies that happen to have an extra chromosome like my unborn daughter. I needed to know that our family would still be able to live life to the fullest. I continue to have concerns and emotions that overwhelm me at times. Will she struggle in school? Will she fall in love and dance at her wedding?
In our appearance-focused society, it can be hard to accept what makes us different and embrace the differences of others. I am seeing more organizations supporting those with disabilities with love, compassion, and inclusion. This gives me hope! My desire is to educate as I am being educated, and encourage those who are feeling the desperation I experienced.
Our little one is 7 months old now. Her name is Savannah Lanier. She came into this world quickly and strong, with no emergencies or having to go to the NICU. She is developing as a typical little baby that happens to have an extra chromosome. However, she will need a heart surgery to repair a valve defect. As that time approaches, I find myself seeking comfort once again from the Down syndrome community and from those who have paved the way. Although our faith will bring peace, there is something comforting about seeing yourself in a different face and reading about a journey that is all too familiar.
The importance of sharing our story and reaching out to others should never be minimized. I know the comfort, encouragement, and love I have felt through reading similar journeys. I see beautiful families living out their dreams and inspiring others daily. My heart’s desire is to be the person I needed to someone else. I believe a heart that reaches out t
o another with compassion can heal a soul and change a life. That is the power of love!
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Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!