Aralyn Faith Walden, Trisomy 8, 7/26/2010
On November 24, 2009 I learned that I was pregnant. What a joyous occasion, right? Wrong! Don’t get me wrong, I was thrilled to be expecting but the news I got shortly after turned my world upside down. I was desperate to know if we were going to have a boy or a girl but the day I heard “It’s a girl!”, I also heard “Something’s not right.”
My daughter, Aralyn Faith, had fluid on her brain. I researched and learned that tons of “normal” people live “normal” lives with hydrocephalus, so I thought I could handle it. Aralyn Faith was then diagnosed with a rare chromosome disorder called Trisomy 8 and Agenesis of the Corpus Callosum after an amnio and fetal MRI. Sitting on the cold, plastic chair, fists clenched, I was told that my daughter would never live. I had felt her, named her, talked to her, carried her and then had to plan to bury her. My first thought was that they mixed up my labs with someone else. No one in my family has any kind of disorder, especially not chromosome related. But there was no mix-up. The lab results belong to me and my unborn child. My sweet, innocent angel was dying and I couldn’t do anything to protect her. She was in my womb and I couldn’t protect her.
I had no idea my daughter was fighting a war all on her own. I was given 2 choices: terminate, which was highly recommened on a regular basis, or deliver and watch her pass away. On July 26, 2010 Aralyn Faith entered this world at 8:03am weighing 6 pounds, 2 ounces. She was beautiful! Her deep purple, blue eyes cut straight through my heart. I had to touch her, see her, smell her, kiss her. I knew she would be going home to her Father soon and I didn’t think I could let her go. Hospice prepared me, family supported me, doctors informed me but once I saw her, I could no longer except her fate. My recovery room was flooded with family, friends, and church family. Everyone got to see the “Miracle Baby”.
News traveled fast in the hospital. I remember looking at the clock and it was 9:27am. Over an hour had past and it was surely getting closer…closer to my daughter’s death. Our room was lit up with flashes. We weren’t expecting much time with her but we were going to have every single moment captured. 24 hours went by and Aralyn was still with us, on the third day she, and went home on Hospice. That moment is when I realized that maybe, just maybe God was not ready for her yet. We brought her home to an empty room. Why decorate a nursery when I was going to come home without a baby? A few close friends turned an empty room into a beautiful nursery in 2 days. And then I cried. I had a terminal baby in my arms, in my house. What was I supposed to do? What if she died? Who do I call? 911 is to save the living. I was terrified. I was empty. Everyone prays for a healthy baby and some even wish for a certain sex. All I wanted was a living child. Hair color and the number of fingers she had didn’t mean anything. I just wanted her, prayed for her to breath. In and out, in and out…I never knew a child could be born without that ability.
Now, 31 months later, Aralyn, who most call Bunny, is no longer on Hospice. She is living and proving doctors wrong every step of the way. Some of her diagnoses include Trisomy 8, 8p Duplication/Deletion Syndrome, Legal Blindness, GERD, Hypotonia, Scoliosis, Pervasive Developmental Disorder, Agenesis of Corpus Callosum, Epilepsy, Obstructive Sleep Apnea, Nocturnal Hypoxemia, and Rhombencephalosynapsis.
Because she is at high risk of aspiration and has a delayed suck/swallow sequence, Aralyn has had a feeding tube since six months old. With physical, occupational, and speech therapy three times a week, she stays busy. Aralyn is able to hold her head up and sit up with assistance and was able to sign “more” and “bite” before her last seizure. The greatest struggle right now is getting her seizures under control. She’ll be going into the hospital in the near future for a week long Phase One EMU Study to see if surgical intervention is the best option. Her newest AFOs seems to be helping a lot, and she is now able to work in her gait trainer and stander. She isn’t reaching your “average” goals, but she’s reaching her own in her own time, and that’s enough for us. Bunny’s care is extensive and she keeps me on my toes, but I am so incredibly blessed and thankful to be her mom!
You can follow Aralyn’s journey on Facebook at https://www.facebook.com/