Dee’s Story: Every Story Is Different!
January 29, 2025
We were so glad when Dee said she wanted to share her story about her daughter, Mattison, and her prenatal diagnosis of Trisomy 9. As Dee shares below, every story is different!
Thank you Dee for sharing your story with our Mama Bear Care community! We love to see your Mama Bear strength and spirit!
Dee’s Story: Every Story Is Different!
By Denie R. Sidney, MSW with Warrior Mattison Grace Sidney
Mattison has the 4th most rare occurring trisomy of rare trisomies. The most frequently occurring trisomy is Trisomy 21, also known as Down Syndrome. The 2nd most occurring trisomy is Trisomy 18, also known as Edward’s Syndrome, then the 3rd most occurring trisomy is Trisomy 13, also known as Patau’s Syndrome. Mattison has 2 versions of Trisomy 9; Partial Trisomy 9 and Mosaic Trisomy 9, which is why the doctors gave her less than a 1% chance of survival. Her karyotypes are: 47,XX +9[8]/47,XX,-del(9)(q22)[7]. She has some cells with duplication of the “p” arm and some with duplication of the “q” arm with a microdeletion of q22.1 As a result of the Trisomy 9, she also developed a neurological condition called Dandy-Walker Syndrome.
My husband and I first learned of Mattison’s diagnosis during my non-invasive prenatal test (NIPT). The results came back when I was 13 weeks pregnant. That day and that phone call are etched in my memory, so much so that I have written about it in 3 published books. I had never heard of “terminal prenatal diagnosis” and “incompatible with life”. That phone call altered history that morning. It changed my career, the way I see life, my capacity for empathy, my health, everything.
My husband and I were told not to have a baby shower, not to decorate a nursery, and not to buy anything until later in the pregnancy. We were encouraged to plan Mattison’s funeral because it would be too difficult to do once she actually passed away. There was a part of me that handled things in a matter of fact way, which was my coping skill. Then, the other part of me was crumbling and questioning how did I get here? Why did this happen to me? My family, which included my husband and myself, went through lots of emotions during the pregnancy, including fear, anxiety, closeness, distance, and confusion. I shut out my immediate family initially. Then, once Mattison was born and survived, Mattison taught everyone in my family about this new side of life. Mattison has reinforced my family’s belief in God’s sovereignty cementing scriptures like Jeremiah 29:11 and Psalm 139:13-14. My sisters, nieces, nephews, and friends have become more aware and sensitive to issues surrounding medically complex/medically fragile children and their families.
God has used Mattison’s life to teach me so much. Ultimately, to rely on Him and to believe His promises in the Bible. My faith and understanding of God’s character has been challenged. My relationship with Jesus has become the most intimate as it has ever been. I have watched God provide for me spiritually, mentally, physically, emotionally, and financially even when everything is not alright and doesn’t turn out the way I want it. I don’t believe God purposely “did this” to Mattison so I could learn these lessons, but because of the sinful nature of mankind, sickness and abnormalities do occur. God kept His promise in Romans 8:28 with Mattison’s life.
I would tell parents to talk to other parents before doing internet research. There are so many more resources available now, than when I was pregnant. The survival rate for children diagnosed with Trisomy 9 is much higher that what is currently on the internet and printed in medical books. Each child is different, and we each will walk a different path as parents with our children. YOU CANNOT DO THIS ALONE! Other parents who are living the lives of primary caregivers to children with rare trisomies are your best resources. Support groups, therapy, psychiatry, and leaning on your faith and spiritual support are some of the best coping strategies for this journey. Allow your family and friends to learn and help you.
*** We would also like to share Dee’s books and her bows ***
Dee’s Website: hairbowsnbutterflies.com
Facebook: AuthorDenieSidney
Email: [email protected]
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