Tuesday, February 7, 2012

Kemper :: Child with Spina Bifida

Kemper is 14 months old, he has an upper sacral myelo, neurogenic bladder, hydronephrosis, and a VP shunt. He is blonde and has fickle hazel eyes, sometimes they're steely blue, other times golden or green. As I type this, my husband is reading a book to Kemper, who is turning the pages for him. He worked on his physical therapy exercises with him a little while ago. He ate some apples and ham for lunch. We have a typical family routine. We just had to adjust a few things for Kemper. That's really no big, considering that having a baby flips your life upside down anyway.

My husband and I got pregnant and because I was 35, we opted for some blood screenings. One came back with elevated levels that indicated Spina Bifida. Ultrasounds showed the brain's "lemon sign" of Spina Bifida. My doctor and a genetic counselor ushered us into a little room and told us about Kemper's SB. It was brutal, seriously, brutal. We asked a few questions and they told us about paralysis, bowel and bladder issues, mental retardation and shortened life expectancy. They offered us termination as an option. We went the next day to a doctor who had specialized in SB and worked with the MOMS trial doing fetal surgery to close the defect before birth. He told us we might not even know Kemper had Spina Bifida by the time he's two. His office gave us a book that hadn't had a new printing in 10 years about raising children with Spina Bifida. Even though we knew it was a bad idea, we took to Google and found some pretty grim stuff. Everything seemed vague and negative and broke our hearts. I was part of an online mom community and participated in a forum for women having babies the same month as me. Through that site I found the game changer. There is a forum for moms of babies with SB, and they were my strength, information, and the personal connection I needed to prepare for Kemper's birth. Now I'm part of a bigger online SB community on facebook and have made some wonderful friends and gotten some great tips and advice. I've had an opportunity to get to know some other moms with kids with SB and plan to attend the SB conference this year and meet some of them. Our area doesn't have an active SB chapter and plans to meet another family with a child with SB near us never came to fruition. Online is a great alternative to connect with the SB community and I think it's important for awareness! The blogs, videos, forums, groups, etc... all of them give a glimpse into the life of a family with a member who has SB. I think that's invaluable. I wish we'd had that when we were pregnant and truly unsure of what to expect. Providing that look, that opportunity, for people to see how boringly typical our lives are and how freakin' awesome Kemper is, is what I'm really passionate about. People with SB aren't defined by it.

We are fortunate enough to only have a three hour drive to Duke University Hospital, where Kemper was born. He was delivered via c-section, as the neurosurgeon that treats him didn't want any trauma from labor and delivery on his spine. My husband got a picture of him for me before they took him to the NICU. I wouldn't see him in person for seven hours, at which time I would go completely gaga in love with my squishy cheeked little baby. He had the closure surgery the next morning. Eight days later, he had to have a VP Shunt placed. A few days after that, the sutures on his back opened up, and so on and so on. It took us seven weeks to get him home. That was incredibly hard on our family and not a typical stay length for a baby with SB. We got him home and he got a GI bug and wound up back in the hospital. Then he got a UTI and spent more time in the hospital. He's had tests and studies on his head and kidneys and bladder, we go to SB clinic every so often, he had a shunt revision, and a hydrocele repair. It's been a long 14 months, but I swear this child had the hardest time with strep throat, not surgery. We would ask doctors, will he walk? Will he pee? Will he have kids? Will he do this, will he do that, will he????? They always told us we'd have to wait and see. Except on the walking part, he's well on his way, he cruises a lot. There is rarely a concrete answer in SB... and it's maddening. Learning to roll with it is what has saved my sanity. That and a counselor to talk to every so often. An objective person to talk to has been great for me.

Going Mamma Bear on people is something every mom does from time to time. Being in the position of new mom with a baby with special needs can amp up the sensitivity controls. It's hard to figure out where you are on the spectrum from hard exterior to heart on the sleeve. It's hard to know where to draw the line sometimes. I mean, I watch Tosh.0, which is broadly offensive, I'm supportive of the Campaign to End the R Word, and when people are insensitive I get pissed. The line is a little fluid for me that way. But you need to find somewhere to stick that line, or you end up angry and upset a lot. When nurses didn't properly put a barrier between Kemper's diaper area and his surgical wound, I went Mamma Bear. Justified. When a stranger asked me what was wrong with Kemper, I went a little Mamma Bear with a side of education. (I'm working on that.) Online, I'm learning to try and say my peace without getting offended. Sometimes that's really hard, but I'm working on it. I changed my way of thinking in a lot of ways after having a child with special needs. It happens, but it can't rule me or my family.

The children I've been so fortunate to become familiar with in the SB community have something in common. They are champions, brave and strong. They endure lots of doctor visits, surgery, procedures, tests, and other such unpleasant things with a great attitude. They work hard to achieve what other kids take for granted. They are great kids with big smiles. They have parents that love them, dreams to chase, and lives to touch. They don't need pity, they need understanding and an opportunity.

So that's kind of it in a nutshell, that's how my family came to be part of the SB community. These are some of the things I think are important. I have a blog, www.pieceslived.blogspot.com, a youtube, bethanyf75, and a facebook group, www.facebook.com/groups/161036967316391/, to spread awareness and grow our community. Thanks for letting me share that with you.

Thank you for sharing Kemper's story Bethany! If you or your child has Spina Bifida, and you would like to share your story, please email me at contact (at) spinabifidastories.com!