Ian's Story

My husband, Justin, and I were married in June of 2007. That following October I discovered I was pregnant with our first child. We were very excited and also kinda scared. A few weeks later I started a new job, and threw up for the first time on my second day there. I was sick every day, and miserable. I remember complaining about it to my OB/GYN at my 16 week appointment, where I also had my blood drawn for my quad screen. A few days later, while I was at work, my doctor called and said one of my numbers on the quad screen came back high, and it indicated a spinal cord defect. I know she said the words "spina bifida" because I made the mistake of Googling it later that day, but at the time I just went numb and listened to her instructions for procuring a special ultrasound at the "big hospital", which would tell us for sure if something was wrong.

As you can probably guess, that ultrasound proved that, yes, our baby had a spinal cord defect known as myelomeningocele, the most severe form of spina bifida. We also found out that same day that our baby was a boy. We spent the next few weeks talking with every doctor who worked with spina bifida that would see us. It was a terrifying and exhausting time, but our families and friends provided love and support to see us through. I had to have frequent ultrasounds to check on the baby, his lesion, and his brain, but other than that it was very normal. I had a baby shower and prepared the nest for our son whom we'd decided to name Ian James.

Ian was born in June of 2008 via c-section. I heard him cry and saw him for a brief moment before they whisked him away to the NICU on another floor of the hospital. I didn't see him again for almost six hours, when the feeling in my legs returned and they allowed me to be wheeled down to him for a few minutes. The next day he had his first surgery; the neurosurgeon and the plastic surgeon put a patch over the hole in his spine and closed the opening in his back. Three days later, we carefully held him for the first time, being careful not to tangle his IVs and monitor wires.

Justin and I meeting Ian before they took him to the NICU

A week later, he had another surgery to insert a VP shunt into his brain to combat hydrocephalus, a common side effect of spina bifida. The shunt drains excess fluid from his brain into his abdominal cavity, where it is absorbed by his body. Three days after this surgery, ten days after his birth, we took Ian home from the hospital. He could not lay on his back at all so we were sent home with a car bed and an apnea monitor. Those first few weeks were full of doctor appointments, therapy consults, and home nurse visits, but our boy was home with us and we were happy.

Since that time, Ian has had one shunt revision surgery at three months old, a surgery to correct his eye alignment at 2 1/2, and a urological surgery at 4 1/2 years old. He wears ankle-foot orthotics (AFOs), and also a plastic body brace to prevent the worsening of his spine curvature. In August 2011 he got his first custom wheelchair and has been rolling full-time ever since! He attends the Early Childhood program at our local public school and absolutely loves it! He loves playing with cars, reading books, and spending time with his grandparents, aunts, and uncles.

Ian enjoying the outdoors on his bike

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