By: Samantha
Mommy to Eden
Trisomy 18
OAW journey sessions since 2015
Eden was born at 37 weeks and 6 days in May of 2012 via c-section. We didn’t know anything was wrong with her. She sounded strong but was in fact suffering. Eden was screaming because she couldn’t breath and was trying to catch her breath.
We found out on the 7th of May that Eden had Trisomy 18 (Edwards Syndrome). Doctors noticed some physical characteristicsthat made them want to test for Trisomy. She was only 4lbs and 3.3ozs, had clinched fists (pinky/index fingers over lapped her middle/ring fingers), low set ears, strawberry shaped head, small jaw, and rocker bottom feet (bottom of her feet were rounded). Eden spent a month in the NICU before being forcefully discharged on hospice care.
She was given three months to live and thrown aside by the medical community. We were told by NICU doctors that no one would bother to treat her because she is considered “incompatible with life,” and since she was going to die anyways it wasn’t worth the fight. Eden was constantly referred to as “it” and a NICU doctor even called her a retard. When trying to find a pediatrician we were told by those we interviewed that they would just tell us to take her home and let her go.
We had faith that she was worth fighting for. We did research and found an amazing organization called SOFT (Support Organization For Trisomy 18, 13, and Related Disorders) and even found doctors who wanted to help her in Joplin (pediatrician and the doctor that provides her AFOs), Springfield (Neurologist, Cardiologist, and Gastroenterologist), and St Louis, Missouri (her heart surgeon). She was later referred to specialists in Kansas City as well (Orthopedic and Pulmonology).
We did have Eden tested again before she was a year old and found she had Mosaic Trisomy 18 (89% effected) and not full. Full Trisomy 18 means all of her cells had a third copy of the 18th chromosome, but we found only 89% of her cells had the third copy. So not all her cells had it! This means she has a better chance at life. Although it made us happy, we were informed that there would still be doctors who would not give her the time of day just because of the Trisomy diagnosis in general.
den had two open heart surgeries before the age of one. A g-tube was placed at age five due to aspiration pneumonia, she would swallow and breath in liquids at the same time. She double hip surgery at age six because her hips were coming out of the sockets, double hip plate removal and tendon lengthening/relocation at age seven because she needed the plates/screws removed from the first surgery, and her tendons in her feet were tight to the point of curling in her feet.
Eden receives therapy for movements, speech, fine motor skills, and feeding. She is fed primarily through her g-tube, but is working on solids by mouth. She is non-verbal, but working on communication; and is in a wheelchair, but she remains happy and strong. Even with her multiple hospital stays and illnesses, nothing stops this girl.
Eden is 10 now and going into 5th grade!
May of 2022 she was hospitalized with a common cold and aspiration pneumonia. She seemed to be doing ok. She spent her 10th bday in the PICU but was happy, giving smiles, playing with her gifts from staff, and just celebrating her special day!
However, things took a turn. On May 5, 2022 Eden was not responsive. Her oxygen levels and blood pressure dropped FAST! Rapid response team flooded her room, alarms were going off… my baby was happy yesterday and then everything changed! No one knew what was going on.
Eden has a DNR in place and after the doctor confirmed that, she gave me instructions. She said, “Mom, call Dad. I’m afraid this is it. She is tired and we have done all we can do.” My baby was dying.
I called Daddy to get to the hospital, which is 3 hours away from home, as soon as possible. Eden was preparing to meet Jesus. I spent time holding her hand, singing her favorite songs, and trying to figure out how to live with half my heart gone. Daddy made it, Eden was stable, and I called the chaplain. Eden was baptized as we prepared to give her back to her creator.
But things shifted the next day; Eden woke bright-eyed and make herself known! Proof again that God was with us! Our girl was alive and doing better. Her GTube was changed out to a GJTube to help prevent future aspiration pneumonias. After 2.5 more LONG weeks in the hospital, we were able to take our miracle home! She is happy again! We are preparing for yet another surgery August 24th 2022. Her ankles/feet are causing pain. We are praying for the best and praying to bring her home safe.
We love to share her story and bring awareness! She has been on the news twice and is in the Labeled documentary.
Eden loves music, movies, and outings (pre-pandemic). Eden works hard to meet her milestones and has achieved so much already. She loves her brothers and they love her.
Eden is admired by and inspires many. I admire this girls strength and joy! She definitely shows that life is worth it and that when it gets hard you can overcome it!
Her life is like a garden. With hard work, patience, love, and care it can thrive and be beautiful. When God gives you the name of his garden you do what you can to prove God is present and will continue to make things beautiful! That is Eden!
