A Father's Story — One Family's Experience
We first learned that Abby might have Down syndrome about twelve weeks into Lisa’s pregnancy. At that point, Lisa underwent a blood test as well as a nuchal translucency test. The doctor performed the measurements on the ultrasound for the nuchal test and told us that Abby’s chances of Down syndrome were less than one in one hundred and fifty. The blood test produced very different results. Abby’s chances of Down syndrome were now one in five. We were stunned when we received the blood test results, which changed the probability so drastically.
The doctor tried his best to reassure us. With each additional ultrasound, the doctor seemed more and more convinced that Abby would be a typical birth. He did not see the usual markers associated with Down syndrome on the ultrasounds. This combined with the blood test results predicting four out of five probability of typical birth put us a little more at ease.
At last the day had arrived, and we were off to the hospital for Abby’s arrival. The process dragged on over the course of the next 52 hours. We arrived at the hospital Sunday to have Lisa induced. Little did we realize that it would be late Tuesday night before Abby would finally arrive. We were elated. We were exhausted but elated to finally have Abby with us. At that point, the delivery nurse approached and asked if we had been expecting Abby to have Down syndrome. I felt the bottom of my stomach drop. I had experienced the greatest day of my life witnessing the birth of my daughter, and within an hour I was feeling the lowest low.
I was now flooded with worry. What did this diagnosis mean? What would happen next? Why didn’t I research Down syndrome? At this point, we were separated from Abby as she headed off to the nursery for a battery of tests, and Lisa and I were left to grieve the loss of our expectations. I wish I had realized what I see now in hindsight: this was not the end of a dream; it was the birth of a different and quite amazing life.
The next morning, the hospital performed an echocardiogram and a hearing test. Abby passed her echocardiogram, but failed her hearing test. They also drew blood to conduct the genetic test to check for Down syndrome. The agonizing wait to find out the diagnosis began. The characteristics of Down syndrome are very mild in Abby, so it left us with the hope that maybe the doctors were wrong. We made a number of visits to the pediatrician and the hospital for more blood tests over the next week. Each medical professional had an opinion about Abby’s features and would make his or her prediction. In the end, the genetic tests confirmed our fears. Abby did indeed have Down syndrome. The agonizing wait for test results was over, and we could now move forward.
Lisa and I decided not to tell our families about the diagnosis until the genetic test results were in. We did, however, agree to tell our son, who was 12 at the time. Kevin realized the implications right away, and I had a hard time maintaining my composure while telling him. We felt obligated to tell Kevin about the possibility of Down syndrome even without the genetic confirmation. Kevin took the news very well and was familiar with Down syndrome. A classmate of his had an older brother with Down syndrome, and Kevin had spent time with him.
The day after we received the genetic test results, Abby and I went unannounced to my parents’ house. They were surprised to see us, and I could barely tell them the news before I broke down completely. I think in telling them, I was finally admitting to myself that Abby would not have the life I had anticipated and expected. I was very upset that Abby would have to face these challenges. Why did it have to be her, why not me? I am blessed with a wonderful family, and my parents and siblings were very supportive and understanding. Lisa’s family has been very supportive as well.
As I began telling my friends, I began to feel like a grief counselor. My friends were great and very supportive, but some of them took the news harder than I had. I was very thankful for their support and understanding. I still get emotional now two and half years later as I think back about it.
Shortly after Abby was born, Lisa and I talked about the opportunities we would now have. We realized that we would start to meet some amazing new people as we started to get involved in the Down syndrome community. We were right. We were amazed and thankful for the support network that exists. We reached out, and people were there for us. That is still true to this day. I am amazed at the level of caring and concern I have witnessed over the last two and a half years. Without Down syndrome, we would not have been exposed to the good in so many people.
As I look back over the two and a half years, I think I can honestly say that I would not trade the time with Abby. There have been some tough days, but overall the good has far outweighed the bad. Abby has taught me a much greater appreciation for the little things. It still makes me sad to see how hard she has to struggle to reach various goals, but they are that much sweeter when she gets there.
I cannot thank my wife, Lisa, enough for her dedication to Abby’s development. She has managed to coordinate all of Abby’s therapy and doctor visits, and Abby’s progress would not have been possible without her. Thanks, Lisa.
I look forward to a bright future for Abby. She has the stubborn tenacity to surmount any challenge, and she will do it on her terms. In spite of the challenges thrown her way, she’s still managed to wrap dad around her little finger. Abby teaches me something new everyday; it can range from a new sign language sign to what pushing one of the buttons on the DVD player will do. Abby makes me a better person. What more could you ask of any child?
Editor’s Note: Tom and Lisa Benco are now support volunteers for NADS and are providing the type of support to new families that was so helpful to them.