Carl James’ Story

Hello! My name is Megan and I am so excited to have stumbled across this site!!! I have been looking for something like this for years. Me and my family are from Utah. My husband Carl and I have been married for 8 years and we currently have 4 children with one on the way. (one boy, three girls, with a boy on the way) Our oldest Carl James who has SB, our identical twin girls Morgan and Kylee, and our youngest daughter Jaidyn, next we will have a boy :).  We first found out that Carl James has spina bifida at our 19 week targeted ultrasound. The technician kept going back to his spine and I saw the sac and knew something was wrong. I had taken some medical classes in high school and something inside of me remembered something about this and knew it was bad but I couldn’t put my finger on it. Later the ultrasound technician left the room to have us talk to our doctor. My midwife informed us that our baby had spina bifida and that could mean that he would be in a wheelchair for the rest of his life and incontinent of bowel and bladder and it could mean he would be perfectly fine. They had no way of telling at this point. I remember being so grateful that my husband was there and that I was sitting down. I sank into his chest sobbing. I of course started researching everything I could on SB and the appointments with the perinatologists and primary children’s started. He was born in the U of U and later taken to Primary Children’s where they closed his spine at 1 day old. His VP shunt was placed at 3 weeks old and later he was casted for his club foot. The first 3 years seemed the busiest and the roughest medically. Now it’s harder socially. He is now 8 years old. Constipation and shunt revisions are probably our biggest complaints medically. He walks unassisted in our home but has an unstable gait and should use a walker in the grocery store and such but he refuses to do so. When he was in school he used his walker so he didn’t bump anyone in line and so he could keep up with the class. (He is homeschooled now) He definitely needs a wheelchair for places like the mall or the zoo where a lot of walking would be taking place. He has recently become much more independent with his toileting needs. Unless he is soiled badly he will change his own diaper on his own time. I think that’s pretty responsible for an 8 year old boy!!! We are at a point now where we are really hoping to get him out of diapers but still can’t figure out how to get his BMs moving on a regular basis. Having a child with special needs has been one of the hardest things I have ever done but it’s been one of the most rewarding as well. Watching him grow and accomplish things despite his struggles puts me in awe. Finding the balance between pushing him and nurturing him is always hard but well worth the struggle. I have seen him figure out how to do things I never thought possible or never thought to have him try either because my husband made him do it or the physical therapist made him. There would come a point where I just got used to putting on his shoes or pants and I would forget to let him try at some point. I like having an outside view to help me see these times.

I have heard so many stories where parents have been pushed to terminate the pregnancy when the baby had spina bifida and even a story where the parents opted not to have a shunt placed so the child did not make it. This saddens me. My son lives an amazing life and inspires so many people around him with his bright attitude, his perseverance, his humor and his creativity. I am so grateful for the modern medicine that has been able to keep my son alive yet it is so nice to see other mom’s out there looking for alternative options for chronic issues. I look forward to getting to know everyone on here and to hearing your successes!

6 comments

  • Hi Megan! Welcome to the site. Carl James sounds like a pretty amazing kid. My LO is about a year and a half, so it is always great to hear how wonderful the older kids are doing. Thanks for sharing your story and I look forward to more interactions on this awesome site!

    • Thanks for reading! I loved when my kids were in the toddler stage. It is such a fun time! Enjoy every minute. I feel like I spent a lot of his baby and toddler years worrying and wondering what his level of functioning would be and spending time doing lots therapy. I wish I would have relaxed and enjoyed him more in those early years. I hope you are able to do that. 🙂

  • Hi Megan,
    So glad to meet you. Thanks for sharing your son’s story.

    He sounds like an amazing boy! Would love to see a picture if you feel so inclined to post one in the Photo Gallery.

    What are you doing to manage his bowels now, if you don’t mind my asking. Have you considered attending one of the bowel management programs?

    Two articles came to mind for your son and his future mobility:

    http://spinabifidanaturally.com/a-case-in-persistence-and-learning/

    http://spinabifidanaturally.com/strength-training-story/

    With a combination of Anat Baniel Therapy & strength training, I wonder if he could improve his gait, to make it easier for him & more natural and stable.

    Glad you are here and look forward to chatting more.

    Tina

    • I tried to add a picture to my post but it said I didn’t have permission to do so. I was able to add a few pictures to the photo gallery though so thank you for that suggestion. I have been to a bowel management program they offer at the hospital here and they just mention the same stuff….timed cone enema, fiber, good nutrition and timed laxative (usually senna or miralax are their suggestions). I loved the strength training article and the Feldenkrais method article as well. It looks to me that I would need to find a practitioner that knows the feldenkrais method, is that right? I don’t see any in Utah. It’s cool how they can analyze her gait and it made me laugh about her saying she doesn’t wear out her shoes anymore cause my son drags his right toe as well and needs new shoes every 2 months. I am a certified group fitness instructor with the goal of becoming a personal trainer so I definitely believe in strength training! Making it fun for him is the hard part. he actually loves to work out with me though 🙂

      Reply

    • The article refers to Feldenkrais, but what most of us do is Anat Baniel Method. Anat was trained by Mosche Feldenkrais, but while he spent most of his time with athletes, she branched off and tailored her technique for special needs kids.

      It’s truly amazing. Check out this video. It’s long, but so worth it. Toward the end of the video she talks about how kids gain milestones to their parents surprise, not by working on the milestone itself, but by working on mastering & perfecting their current movements. And this is so true!!!

      https://www.youtube.com/watch?v=NAuMU-cVpvY&feature=youtu.be&app=desktop

      I feel silly even listing this because it sounds too good to be true, but my daughter has gained a milestone after almost every intensive session, first rolling back to front, then sitting, then 4 point crawling. And each one sometimes within hours or days of the end of an intensive lesson.

    • Oh, ha, the whole reason I logged on just now was to give you the contact info for two ABM practitioners in Utah.

      Lee Bird
      L.O Bird Muscle Therapy & Massage
      3900 So. 260 E.,
      Salt Lake City, UT – 94107
      “Feldenkrais, Pain, Stress, Relief, Sweedish Massage, & Deep Tissue”
      Phone: 801-573-3531
      Fax: 801-942-9392
      E-mail: leebird@comcast.net
      ABM Certifications and year achieved:
      Anat Baniel Method Practitioner 2007
      ABM for Children Practitioner 2007

      Anita Miller Reardon
      Draper, UT – 84020
      Phone: 801 572-2486
      Cell: 917 826-6222
      E-mail: anidam@aol.com
      ABM Certifications and year achieved:
      Anat Baniel Method Practitioner 2009

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