Corinne, Spreading HOPE for Baby Eden Elio
Ambassador Corinne, fundraising in memory of baby eden elio
“My first pregnancy journey ended in an 8 week miscarriage to a baby I never got to know. I didn’t know the gender and they had no name. My second pregnancy gave me a beautiful little girl named Emmerson Luna who is now a healthy almost 3 year old. After our daughter we prayed and hoped for another baby. Amongst all the fear, especially after going through one miscarriage already, we hoped for the best and were blessed to find out, after 6 months of trying, to be pregnant once more. We were over the moon once again, but also full of so much worry. What started as excitement and joy soon turned to anxiety and fear when my husband and I found out we were labeled ‘high risk’ because of a heart defect I have had since I was born which wasn’t found until just recently. I was so scared thinking I wouldn’t be able to carry my baby to term and if I did, it would cost me my life.
A month later, after NIPT testing, we got the devastating news that our baby was high risk for Trisomy 18 also known as Edwards syndrome, a chromosomal abnormality that adds an extra copy onto chromosome 18. Trisomy 18 is viewed as a diagnosis “incompatible with life”, resulting in physical abnormalities, mental disabilities and more. After much research and a lot of help from other moms, I grew to know that so many babies born with Trisomy 18 were in fact compatible with life, which gave me hope. One amniocentesis later and a 2 week wait, we got a call from a geneticist that left our hearts full of hurt and grief. With the diagnosis of full Trisomy 18, we also found out we were having a little boy. Our little Eden Elio had full Trisomy 18. With that diagnosis and so many ultrasounds that resulted in tears, I stopped counting, our hope dwindled and the thought of bringing our little boy home with us was becoming a distant dream. Eden didn’t have a frontal cortex, an underdeveloped cerebellum, a VSD (heart defect), horseshoe kidneys, clubbed feet, clenched hands. All markers of T18. With each ultrasound, he got worse. New cysts, fluid in his heart, and he wasn’t swallowing amniotic fluid. We tried to stay hopeful. I did everything I could to cherish my pregnancy with him; a maternity shoot (at 24 weeks), a baby shower (at 27 weeks), 4D ultrasound (at 32 weeks), all so soon because we were told he would never make it full term. We loved him with everything we had. Then one day, his cord started to go necrotic and I had to be induced. At 33 weeks and 4 days our little boy was welcomed earth-side.
Eden Elio was born May 29, 2023, weighing 3 pounds exactly and 16 and a half inches long. He was as perfect as could be and he gave us an amazing hour and a half before he gave me a tiny smile and took his last breath and went home with the lord. Our Eden showed us so much throughout this whole journey; how to love with everything we have, cherish every moment and not take anything for granted, to take risks and follow our hearts and most importantly to trust God. But even then, we had to go through our grief once more, without him. We miss him every single day and my family lost out on the chance to have him with us for a lifetime. I began making TikTok’s throughout my pregnancy journey and even now, through my grief journey to help other parents through a diagnosis as hard as Trisomy 18, and to let others know they’re not alone. 3 months later, after prayers to God and talking to Eden, we hoped for another baby, one that would show us that we’d be okay. We found out we were pregnant again only for a week later to go through a chemical pregnancy. Another miscarriage. I have three angel babies, who look down on me everyday. 2 with no names and no genders and my sweet boy, Eden. I know our pregnancy journey isn't done yet and I hope that one day will be the right time for another but for now, we hope, we pray, and I know that I’m being protected and watched by my angels above.
I’ve used the RTZ site to inform others on infant loss and how to help parents navigate grief and this new journey. I have also used this site for support groups specifically for fatal diagnosis’ and the facilitator for that support group helped me through my tough decisions and things to think about going through a pregnancy knowing your child wouldn’t survive.”
Pregnancy and infant loss is an unique type of loss, leaving the grievers to feel isolated and unsure of how to move forward. We'd be grateful if you you would consider making a contribution to Corinne’s fundraiser in honor of Baby Eden Elio. Your gift ensures that other parents who endure loss on their journey to parenthood have the support, resources, and community they need in order to navigate life after loss.
With your support, here’s what we were able to accomplish during 2022 (2022 Annual Report):
Fifty percent of support group participants received financial support to ensure that all parents have access to services.
Enhanced outreach to and created support services for Black, Indigenous, and other Communities of Color as a response to the alarming rate of preterm births and stillbirths caused by racial disparities in perinatal and infant health.
Offered 50 different support group programs (virtual workshops, virtual support groups, and in-person retreats) to our community of bereaved families.
Supplied our unique perinatal bereavement guides to 400 hospitals and providers to assist in caring for grieving families.
Hosted 10 perinatal bereavement education webinars to parents and providers.
Created community and spread awareness about pregnancy and infant loss through social media.