I Have a Baby with Down Syndrome

Dear Birth Parent,

We are here for you. We want you to know that we will walk along this journey with you, as you navigate your child’s diagnosis. We will provide a listening ear, answers to any of your questions, and resources along the way.

Let’s talk about getting that diagnosis. A lot of families refer to this as a “flashbulb” moment. This is a moment that you will never forget, and you will carry it with you for a lifetime. I still remember when the doctor told me my son had Down syndrome. I had my son at 7am, and the House Pediatrician woke me up to tell me the news. I was by myself; after what we thought was a successful labor, my husband and parents went home to rest while I slept. I remember every word the said, I remember the feeling afterward. The feeling of someone coming in and turning your world upside-down. Time just stops and you are left with this diagnosis, and you don’t know what to do with it.

First of all, it’s okay to grieve. You’ve received heart-breaking news that your child will have a life-long, permanent disability. Allow yourself to go through the grieving process. Reach out to us for support, we have a list of families who have been through this grieving period, who would be honored to share their story and support you during this time.

There are some great resources to read during this time, and they are listed here:

Baby Center offers a place for families to go and post questions anonymously, and receive support from a community of parents who have received a diagnosis of Down syndrome for their child.

“Welcoming a Newborn with Down Syndrome: The New Parents’ Guide to the First Month" - Download the book here at no cost to parents.

The Down Syndrome Diagnosis Network is a wonderful support to families who have just received a diagnosis.

The International Down Syndrome Coalition offers support for families in the form of various Facebook groups.

Let’s start with the basics. Minutes after the doctor gave me my son’s diagnosis, a nurse came in with a “Hospital Packet” that was put together by the local Down syndrome parent group. I was not ready to open the packet…I wasn’t ready to feel the reality of what was just said to me…that my son had a permanent, life-long disability. Instead, I asked the nurse to bring my son to me. I just wanted to hold my Christopher.  My husband made it back to the hospital in record time, and he was wanting to dive in head-first with educating himself on what Down syndrome was, and how this diagnosis was going to affect our son.

If you are ready, listed below is updated, correct information at the National Down Syndrome Congress, and the National Down Syndrome Society. There is a lot of information on both of these sites, so take it in chunks. Take your time and learn about Down syndrome. Don’t overwhelm yourself; read it in chunks. If you have any questions along the way, contact us.

When you are ready for local resources and information, if you did not receive a hospital packet, contact me and I will get you in touch with your local parent group.

Where do we go from here? We want to make sure you are educated on Down syndrome with updated, accurate information. We also want to make sure you have learned about parenting a child with Down syndrome, and all of your questions about raising a child with DS have been answered. If you have additional questions or just want to talk, you can contact Stephanie via voice or text at 513-709-1751, or email her here. If you still feel like you may not be able to parent, we are here for you. We will walk with you as take this journey of possibly placing your child for adoption (link to “I want to make an adoption plan”). We will be here with you every step of the way.

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