Baby Kennedy

Baby Kennedy

Thursday, April 14, 2011


At our MRI results appointment, we met with Dr. Fuchs Nurse Practitioner first. She looked at Kennedy's ears for us as we'd been battling ear infections, asked us a few questions, looked at her strawberry, and left the room to share her information with Dr. Fuchs before his arrival into the room.

Dr. Fuchs does NOT seem like the expected neurosurgeon type. He is SO friendly and honest and laid-back. He answered all of our questions and encouraged us to ask more. He told us to call or email any time if we thought of more questions (which we did).

Sooooo.... she has a tethered spinal cord and needs surgery to detether it. Basically, when her spinal cord was forming in utero (around the 18th-22nd day after conception, before I even knew I was preggers), it didn't form correctly. Instead of a free floating spinal cord, hers attached to a bunch of soft tissue on the side and at the bottom. The problem with this is, it is stretching her spinal cord. In a normal infant, the spinal cord is free floating for a while and as they grow, it eventually moves up into the spinal column where it is protected. As you bend and reach for things, it moves up and down in the spinal column.

With tethered spinal cord, it is a problem because the spinal cord never moves up into the spinal column because it can't because of the attachment. As she bends and reaches, it stretches even more. This can be painful and neurologically can cause many problems, primarily with control of bladder and bowel function as well as walking issues with things like turn out and strength as well as scoliosis and sensory problems. Along with pain, it can also cause numbness.

The way he put it is, if she starts to have symptoms like those mentioned above, they are not reversible so once she loses control of her bladder, she would likely never have control of it. A catheter is not cool. A diaper now is fine but not so cool in high school. Although this truly is not funny, he was trying to lighten the mood and it was appreciated at the time.

Hearing that she needs surgery and a major one at that, it felt like tunnel vision, but in my ears instead. My ears literally hurt, they echoed, they rang. I fought back tears and looked at Nick and could tell he was too. I feel so bad for her even though she really doesn't have a clue what's going on right now.

I think we are lucky that it's being done now because if things go perfectly well, she may never know this was even done. She may never have any lasting problems from it. But... she may. Also, there is a 40% chance it can retether - that's a HIGH PERCENTAGE! How would we know it was retethered? Symptoms. We are lucky this time because we have the physical markers but if it happens again, it'd be because of symptoms. Remember, symptoms are not reversible. Augh...

Also, and this may not seem like much to many but if you put yourself in my shoes, it might seem like more. I know we'll get over it and I know in the grand scheme of things, it's not the biggest worry BUT Kennedy is the daughter of a PE Teacher and former athlete in every sport and current coach in practically every sport and the daughter of a former college soccer player. Kennedy can never play contact sports. I don't care what anyone says to me but that STUNG!

Kennedy's tethers are called a fatty filum terminale and a lipomyelomeningocele. Her surgery is estimated to be approximately 3 hours and she will be at Duke 6-7 days post surgery.


  1. If everything goes well and no symptoms occur for several years...will she be able to play sports then.

  2. any surgery or any illness that happens to our children is always a big deal....but I can only imagine. The thought of your child not being able to follow in your footsteps or make her own athletic career is bound to be heart wrenching. But remember the doctors may perform the surgery, but they aren't the ultimate physician...GOD is!!! All things are possible through God who strengthens me.....

  3. I won't lie, Jerry and I were pretty upset that Kayla wasn't going to be able to play the contact sports either.. it's tough to hear, athlete or not! You want your kids to be able to participate in the group activity that her friends are in.. and ours can't. :( You know what that will be like for them, and it sucks! But- we have thought of other sports that she can play like softball, volleyball, swimming, or even track... :) And that does help a little.

    40% chance of rain, really isn't much, but when it comes to this... 40% chance is very high! :( I'm so sorry!! Our percentage for having another CDH baby was yours is high! :(.. and with the not knowing if she retethered.. ugh so stressful. I'm so sorry!! But the only thing you can do is think positive! Maybe her first symptom would be the pain.. not fun for her but at least she won't have to wear a diaper...? :/

    Kayla's surgery is about the same amnt of time and same amnt of recovery time- this is major surgery!! She will do great! I can only imagine how tough she is knowing you and Nick! :)

    I hope your blog is kinda like therapy for you and helping you get through this. A child going into surgery is hard on the parents - and sometimes writing about it helps.

    Thinking about you and praying all goes well. Hang in there Martha and Nick.. you'll do great and Kennedy is so lucky to have you as parents to care for her while she recovers! <3

  4. My son had TCS surgery when he was 5, last June 7th, 2010. 4 weeks later he was enrolled into Taekwondo. 1 year later, he's a yellow belt and on his way to have a black belt in 3 years (at 9 years old). Don't let anyone tell you they cannot do something! They can be wrong! Chandler's bowel movements have gotten better, his walking, balance, movement, even his speech is improved! I was truly amazed at how the surgery and the martial arts have helped him grow and recover. There is a blog post on my blog about his progress and his story. Feel free to read it. I am just beginning to read your story. I'll probably comment more as I read on. Thoughts & prayers! Melissa