Prenatal Down Syndrome Diagnosis journey.
At 13 weeks I got the call that our genetic blood test came back high risk for Trisomy 21 aka Down Syndrome. It was fully confirmed via amnio at 30 weeks. I was terrified because I knew nothing; I went on google and all that was there was all the thing that can go WRONG; all the scary facts and just not much confirming this was a positive diagnosis to receive. Insert full blown FEAR.
We also had a previous loss of a son at 20 weeks pregnant years ago; so I thought it would happen again given that we now had a confirmed chromosome abnormality. All those memories came back heavier than ever.
I wasn’t sure I if I should share what we were going through or just quietly go through it. I had already shared we were expecting and that we were having another boy. We currently have 5 boys and one girl so our daughter is still the reigning queen here.
I decided to share because it was eating me alive not knowing what was ahead; I needed support and I didn’t know where to look. The genetic counselor and doctor had facts and data but honestly I still can’t read how they feel about babies with Down syndrome because they used the words “I’m sorry and I know this wasn’t expected” but still to this day haven’t given any positive excited vibes, so from the first appointment I knew I needed real people who had walked before me to guide me.
Social media was a Godsend in this aspect; when I shared; moms from all over shared pages they followed, organizations they knew about, moms who shared day to day life online, adults who have Down syndrome and are living beautiful lives. Within hours of sharing I was overwhelmed with beauty and HOPE. The tears of fear slowly faded week by week as I learned more from these families online, the showering of love and encouragement transformed the entire experience. I wasn’t alone like I felt that I was the day we got the call.
While every story is complex and loaded; there’s not enough space to share here every detail but every fear I had about our babies health and things popping up via ultrasounds never happened. All the things those initial first scary google searches told me haven’t came true. To be honest; he’s growing on the same track his brothers and sister did. The only thing different is an extra chromosome.
If you’ve just gotten a diagnosis prenatally; feel all the feels for as long as you need to. Avoid google and connect with real moms and families sharing what life is really like. The heavy fear and anxiety will begin to fade and joy will shine in ❤️ we’re mere weeks away from meeting our little man; and he is just as special and worthy as our 6 older kids.
I truly believe we are given alternate paths for a reason; we can kick and scream that it isn’t fair or we can lean into the beauty of a completely different life. I have no doubt this next chapter will change us all for the better ❤️
#lemon8partner #downsyndrome #pregnancyjourney #momsoflemon8 #downsyndromeawareness
Receiving a prenatal Down Syndrome diagnosis can be overwhelming. Many parents experience a rollercoaster of emotions, from fear to hope. Understanding the nuances of Trisomy 21 and the supportive resources available can help. Connecting with organizations such as the National Down Syndrome Society and local support groups can provide invaluable insights and connections. Educating oneself about Down Syndrome through reliable resources can significantly alleviate anxiety. Authors like Ellen Stumbo and Jennifer Smith provide personal narratives and informative content that celebrates the lives of individuals with Down Syndrome. Blogs and forums can offer firsthand accounts that inspire positivity. Moreover, it’s important to remember that each diagnosis is unique. Many children with Down Syndrome lead fulfilling lives, achieving milestones just like their peers. Community engagement and advocacy play crucial roles in fostering understanding and acceptance. The journey may be daunting, but the transformation of fear into support can illuminate the path forward. Reach out to real families and the vast community online. By sharing stories, parents can dismantle misinformation about Down Syndrome and create a network of solidarity and encouragement. This journey, while fraught with challenges, also offers profound beauty and enrichment to family life.
My baby girl has down syndrome ❤️ ppl with down syndrome are absolutely amazing people!! Fear nothing and are always happy and see the good in everything!! If I could put an extra chromosome in others I totally would!! It’s truly a gift from God! And they have their own little community which is so accepting & caring