As many of you know, we have been
cloth diapering our
micro-preemie son since he was a week old, which included his 7 month
NICU stay. He's six years old now, and we still have to use cloth part
time for car rides, etc. due to his developmental delays. We've found
more and more families find us because they are researching how to use
cloth diapers with their
children with special needs, and we felt
it was time to put together a resource for those families.
We reached
out to well-known members of the cloth diapering community and asked if
they'd be willing to share their stories. We share these stories
with you with the hopes that you will find them helpful and feel free to
share these far and wide as a resource for other families with
differently-abled kiddos so we can normalize acceptance and
#makeclothmainstream!
If you're looking to get started with cloth diapers, please check out our
cloth diapering starter kit HERE as a great, affordable way to get off on the right foot. We'd be happy to customize it to fit your child's needs if you just send us an email!
Our first story comes from Christine Bondi Cerrato, a mom I "met" in the GroVia Families Facebook group back when her son Ethan was born. I can't tell you how much I appreciate these moms and their willingness to share their stories.
Christine and Ethan
My amazing 3 year old son, Ethan, was born 6 weeks prematurely fighting for his life. He was born with a chromosomal defect known as Currarino Triad. This syndrome is characterized by anorectal malformations, presacral masses, and/or sacral agenesis. In less obscure medical terms, Ethan was born without a rectum, with a large tumor, and parts of his sacrum missing/malformed. He was taken into surgery six times during those months as surgeons attempted to create a body that was compatible with life.
Against all odds, they succeeded.
We brought our baby home with a colostomy, mucous fistula, and vesicostomy. These are urinary and bowel diversions that bypass Ethan's 'broken' anatomy and allow him to pass urine and bowel movements safely through stomas on his belly. To complicate an already complicated situation, he also has paraplegia, epilepsy, hydronephrosis and kidney failure.
Having already cloth diapered two older children, I felt confident in my ability to diaper a typically abled infant/toddler. This was a challenge that was way beyond my scope and I needed advice. But when I asked Ethan's urologist how I should diaper Ethan, he sort of chuckled and said that he wished us the best of luck, because it was going to be a long, wet, miserable few years.
I was aghast at the lack of guidance given to parents who were newly on this special needs journey, but I refused to be discouraged. Likewise, I refused to allow my son to have the dismal experience that the urologist assumed would be his fate.
It took many hours of research and a good bit of money to finally find a cloth diapering answer that worked for us and we haven't looked back!!!
We use GroVia ONE's and they are still going strong! In that first year, when Ethan was just a tiny thing, we were able to successfully diaper him using the ONE cover and channeled soaker pads that come as a part of the system. As he grew older, larger, and his urine output increased, we created our own hybrid system of a GroVia ONE cover and disposable soakers.
Three years into the journey and he has recently had a foley catheter and a urine leg bag placed to collect his urine. We still use the ONE shell to help pad, protect, and carry the weight of his urine bag!
His anatomy and needs have been constantly changing, but we have consistently been able to find cloth options that really WORK for us! The urologist never mentioned that cloth diapers could be a safe and affordable option. Had I not already cloth diapered other children, I may never have looked back to all of the varieties, styles, and options available in cloth that just are not available in disposable diapers.
Sometimes, you have a special child, and when you have a special child, you may need to adapt a special way of diapering that is unique to your child, your family, and your situation. That's what we did, and that is what we keep doing each day as his needs change!
