My name is Kate and I am married to Richard, a wonderful husband to me and father to our boys. We have three beautiful boys, Parker, Maxson and Colten.
Our first two sons were born gently and naturally at a local birth center under the care of midwives – Parker in March of 2009 and Max in January of 2011. We loved our birth experiences there and planned on doing our third birth there as well. Unfortunately, our baby was presenting breech still at 35 weeks and our midwife sent us to get an ultrasound – and good thing… On September 18, 2012, just over 4 weeks out from our due date, our baby was diagnosed with Spina Bifida – Myelomeningocele. In short, Spina Bifida Myelomeningocele (the most severe form of Spina Bifida) is the most common permanently disabling birth defect. It comes with a variety of other medical complications and challenges over a person’s lifetime. We went from a very natural, peaceful, non-medicalized birth plan to a fully out of our control medical mess, in our opinion.
Colten was born October 3, 2012 with one of the largest external masses the surgeons at both Sparrow (Lansing, MI) and C.S. Mott Children’s Hospital (Ann Arbor, MI) had ever seen. His back was closed up two days after birth and he spent just under two weeks in the NICU without further complication. We returned the next week for his VP shunt, which would help his body manage his hydrocephalus. He has had one shunt revision since then and some other minor medical issues over the past year and a half.
As I update this page, Colten is about a year and a half old. We have been amazed and frustrated a lot over that time… He is a pretty happy little boy that gets all over the house however he can. He crawls like a speeding bullet, uses a homemade wheelchair and a mobile stander (mostly outside or at large places like museums), is on his second set of AFOs (leg braces) and ready for a new pair because he’s getting so big so fast! He averages 3 appointments each week – mostly therapy sessions but sometimes medical appointments get thrown in there. We continue to struggle with bladder and bowel issues and play a waiting game on those most days. Cognitively, Colten is developing along a typical pathway. Fine motor skills are also up to “age-appropriate” levels. Gross motor skills are where he slides way back down the scale, registering at about a 9-12month old. That sure doesn’t stop him from being a little daredevil though!
Over time, this blog has helped us relay timely information about Colten and our family as we learn the ins and outs of Spina Bifida. It has been most critical during those times of surgery, but we have found great joy in sharing Colten’s accomplishments between surgeries so we hope you enjoy the variety of posts. At times, we even use it to vent about various frustrations. Either way, we thank you for coming by to read our stories!