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The Positive Step Doctors Can Take With Parents After a Down Syndrome Diagnosis

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Like any journey in life, we learn as we go. As we pave the road for others, hopefully we will be able to share wisdom that will offer hope, encouragement and support. 

My youngest daughter, now 7 months old, was given a prenatal diagnosis of Down syndrome (DS). Unfortunately, I wasn’t given any words of encouragement or information about the Down syndrome community from my medical team or from my daughter’s medical team. My family and I were never offered ways that would benefit my daughter or told about support groups my family and I needed during this time of so many unknowns.

On the contrary, I was adamantly encouraged to abort my precious baby. I was given countless negative possibilities of what could go wrong. My only source of information was through Google and social media pages of DS families I found on my own. 

I realize physicians are supposed to communicate options, but what about positive options? What about positive resources? During the last half of my pregnancy, most of what I heard were negative scenarios of what could go wrong. I held tight onto my faith and drew my strength from God. I kept a smile on my face and tried to uplift my other children and those around me with positive hope that I believe God is bigger than any of these negative scenarios we heard from physicians. The truth is, behind my smile was fear, sadness and desperation to hear any positive aspects of DS.

I have been in the dental profession for 20 years. One of the many things I’ve learned is service to my patients is not limited to clinical treatment. Encouragement, kindness and positive support are crucial medication for the soul. The OB specialists and pediatricians have a great opportunity to expand their treatment beyond a clinical diagnosis. Providing names of local organizations that families can connect with, having literature of positive facts available in the office and, most of all, being a supportive listener should be a part of their mission. Listening is the only way we can truly know what another needs. 

When circumstances touch our lives, it often makes us more aware of certain things. Last week was my youngest daughter’s checkup. I didn’t see any information readily available about organizations for children with special needs, nor was it offered. Being involved with children with special needs and organizations or knowing positive information about them is not only limited to the families that are affected. Educating and involving the public is a huge way of closing the bridge of discrimination.

My family and I have recently connected with the DS community for the first time. My husband discovered an organization in Atlanta for families and individuals with Down syndrome called GiGi’s Playhouse. Other parents we met there greatly encouraged us to contact Babies Can’t Wait, which is another organization that will assess the special needs of babies with challenges and will help in various ways.

My husband and I gathered many pamphlets and information to give to our pediatrician for his knowledge and to pass along to other parents who may benefit from it. It’s easy to gather textbook facts from Google, but to have a personal connection with someone with a similar journey has a lifetime affect! 

I also believe children would love to see photographs of various types of children they can identify with when they walk into their pediatrician’s office. Whether it’s a child wanting to see similarities in a doll they are playing with or an adult wanting to relate and gain wisdom from another in similar circumstances, each one of us want to be able to identify with another.

Obviously, families of DS aren’t the only ones who have needs. The OB specialists and pediatricians have the wonderful opportunity to better serve by listening and learning the needs of their patients. Having additional education about the wonderful advances and accomplishments one with special needs can achieve is crucial. This can help give them an incentive to direct families towards positive resources. 

GIGI’s Playhouse is an example of a positive resource. They provide weekly physical therapy for babies and toddlers and have various social classes that include activities and music. Most of all, this organization provides education and support for the entire special needs family and it is all free.

As we recognize Down Syndrome Awareness Month in October, remember a positive change starts with one. Every life matters and deserves an opportunity to live, to be loved and to be nurtured. Let’s all be better by listening to one another and by gaining and giving education. In the words of Dr. Seuss, “To the world you may be one person, but to one person you may be the world.”  

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Lead photo source: Thinkstock Images

Originally published: October 28, 2016
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