My OB-GYN was the engine that drove my journey. Once we received our diagnosis we did not know what to do, there was no instruction manual handed out with our test results confirming that our baby boy had Down syndrome. My Doctors and midwives along with Maternal Fetal Medicine specialists guided me through the multiple levels of testing and referred me to local organizations and also helped me find a pediatrician.
I was fully supported along every step of the way. We never felt alone, one of the doctors even gave me her personal cell phone number to call her at any time. My office visits were never simply a formal check in, they always talked to me like a person, like a mother; not just another patient. They shared in my tears at times that I was scared or tired and also shared in my triumphs as our baby continued to grow and flourish. I had a whole team of cheerleaders who sincerely wanted to help me have the best pregnancy and do all that they could for our family. They also explained the importance of having someone to talk to. That is when I came across DSDN and it was like my family grew over night.
DSDN is an amazing group of women all over the country, who are so eager and willing to help each other. There is always someone who knows what you are going through and in the off chance they don’t, they will find someone who does. It truly is a family. We share in each others achievements, difficulties, and share lots of laughs as well. Anyone receiving a diagnosis should know about DSDN because you can be as involved as you want to be. There are no obligations to participate if you are not comfortable, but it is hard not to be comfortable opening up and sharing with this incredible group of women!
Help spread the word about DSDN by "Bringing DSDN Home". DSDN has over 80 local partnerships where we provide our materials and resources to organizations across the country. Did you know you or your local organization can request DSDN brochures and leaflets? DSDN is happy to send you or your local org our materials to distribute to your local OB-GYN, Pediatrician, welcome basket program, DDD provider or Therapist’s Office. Go here to request: http://www.dsdiagnosisnetwork.org/materialrequestsforparents
When Bad News Isn’t Necessarily Bad: Recognizing Provider Bias When Sharing Unexpected News
June 25, 2018
Dear Doctor, "You Told me Why Our Daughter was Better Off Dead."
September 30, 2016
AAP Guidelines - Care of individuals with Down syndrome