Research

Research

• 1 in 25,000 live births

• Can affect the spine, lower limbs, genitourinary tract, kidneys or intestines.

• Some babies are born with missing kidneys or abnormally shaped kidneys

• Pieces of the spine are missing or not properly formed

• Spinal cord is incomplete, this affects movement, feeling, toileting.

• Legs can be "stuck" in a variety of positions. "Buddha, or frog-like," sticking straight out, or ninety degree angles

• Some are born with clubfoot.

Babies born with SA/CRS are typically small, with narrow hips and loads of issues that can't be diagnosed until after birth. 

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The baby I met after I recovered from my Cesarean was yet to be diagnosed. She was chubby, with light brown hair. Her left leg was stuck in a "Buddha" position (bent at the knee) but she was healthy. She ate properly, peed, pooped and cried like any baby you ever met.

NICU has strict rules on visiting hours, so we spent a lot of time hanging out at the Children's hospital between visits. NICU also doesn't allow children. So my eldest sat in the hospital with us, in a waiting room all day without getting to see or hold her sweet baby sister. After about 2 days of waiting all day, Grace (my eldest) asked to.go get some McDonald's from the hospital's cafeteria. It was a long walk and I was only 4 days post surgery but off we went, for a treat. While walking through a corridor I saw a familiar face pushing a baby in a NICU bed. It was our NICU nurse! Was that our baby? IT WAS! She paused for a few moments while I hoisted up my four year old to meet HER new baby, Anna. "That's my baby, that's my baby!" She screamed into the hallways. 

Our NICU stay was only 6 days long. They wanted to keep her longer but I didn't agree. She wasn't on any medical intervention. NICU is for very sick babies who need constant medical care and she did not fit that bill to me. I discussed with her four doctors and we all agreed she should come home. 

At one week old she had a neurologist, nephrologist, and an orthopedic surgeon that we followed up with religiously. She was diagnosed with Sacral Agenesis/Caudal Regression Syndrome. By 3 months old she also had a physical therapist and an occupational therapist. There is no clear cause for her spinal abnormality, nor is there a cure.