Saturday, October 31, 2009

Spina bifida 101

We've been home for two weeks now, and are loving every second of it.  We're still amazed at how nice it is to have our own kitchen and bathroom, ceiling fans, TV, cars in the garage (as opposed to parked six or eight blocks away), and the list goes on.  Mostly, we are enjoying having our family all together in one place.

Kaitlyn is now five and a half weeks old.  Next Friday, the 6th, would have been her due date, and she is determinedly packing on the pounds.  There's no way she'll catch up to Damon's pace (17 lb at 2 months!), but she's doing pretty well.  At her last checkup on October 20, she weighed 6 lb 6 oz, so she had gained about an ounce a day since she left the hospital.  At that rate, she's probably around 7 lb today.  She's a very good baby, calm, has her alert times, and is occasionally smothered by her brother and sister.  A few pics are posted below.

We wanted to give a quick summary of how she is doing in each of various areas that are commonly affected by spina bifida.  (Tamara, Rachel, and any of you parents out there, hopefully we're not too far off in how we describe things below.)  We'll try to do the same thing every so often down the road, just so you all can get a picture of her status as compared with what one might expect.
  • Hydrocephalus:  Up to 90% of children with spina bifida have some degree of hydrocephalus, or fluid buildup in the brain.  Kaitlyn technically has this -- her ventricles have measured a little high (see here) -- but it is not symptomatic.  We're watching her carefully for symptoms like excessive vomiting or fevers, measuring her head size, making sure her fontanels don't feel full, making sure she's alert, etc.  We've read that for babies who had the prenatal surgery, the median length of time after birth for ultimately needing to have a shunt placed is about 180 days, so we'll need to keep watching this for a while to come.  But so far so good.
  • Chiari II malformation:  Where the brainstem is pulled down into the cranial vertebrae, leading to the hydrocephalus described above.  Children with this can also develop problems with swallowing, breathing, etc.  Kaitlyn had this malformation in the womb, but it was reversed by the prenatal closure, as we had hoped.  (We wrote about this in our  October 7 post.)  
  • Leg mobility:  The most obvious symptom of spina bifida is some degree of paralysis and loss of sensation in the legs.  Kaitlyn's level of myelomeningocele (hers was from the L2 to S1 vertebrae) would be expected to need crutches and long leg braces up to the thigh or waist, and would probably need a wheelchair for long distances (see here).  But we, and all of the nurses at UCSF, are amazed at how strong and active her legs are.  She kicks very vigorously at times, moving her hips, knees, ankles, and toes, and appears to have at least some sensation when we tickle her feet and legs.  We'll have to just wait and see when she gets older how well she does with crawling and attempting to stand or walk.  
  • Orthopedic problems:  Children with spina bifida are more likely to have clubbed feet, hip dislocation, and scoliosis.  Kaitlyn does not have any of these issues at this point.
  • Bladder issues:  Nearly all people with spina bifida have some bladder dysfunction.  When Kaitlyn was born, she had some slight hydronephrosis (swelling of kidneys), so they had us regularly catheterize her each time we changed her diaper.  The day she was discharged we took her to get urodynamics, where they fill her bladder with a dyed liquid and take X-rays to see how her bladder reacts.  There was some good news:  they did not observe any reflux of urine back up to the kidneys, and her bladder looked smooth and elastic like it should be.  But they did observe what they call dyssynergia; when the bladder constricts to push out urine, the sphincter at the bottom should relax to release it into the urethra, but Kaitlyn's constricted instead for a few minutes, so she wasn't able to release it when she wanted to.  She does usually urinate on her own, but we'll keep catheterizing her (5-6 times a day) just to make sure she voids as she should.  As of now, this is the only major difference between her and our other newborns.
  • Bowel issues:  Children with spina bifida often have bowel problems leading to chronic constipation, and often need a bowel program to gain social continence.  This has not been a problem for Kaitlyn yet; usually this is not an issue until they start eating solid foods.  Many newborns with spina bifida do tend to void all stool constantly, creating severe diaper rashes.  But Kaitlyn doesn't have a rash yet, and it looks to us like she is intentionally pushing out her BMs; we see her grunting and pushing.  We don't know if this means anything yet, but we're hopeful because it appears that she does have some feeling and control in that area.
  • Tethered spinal cord:  This is where the cord gets tugged by scar tissue near the site of the surgery, which can over time lead to further nerve damage.  If any such problems develop in the future, she may need surgery to release the tension.
  • Visual problems:  Children with spina bifida often have strabismus, where one or both eyes turn in or out.  Kaitlyn's daddy had that condition (and even had two eye muscle surgeries to correct it), so we're definitely not counting that out yet.  But so far her eyes don't appear to drift too much.
  • Learning difficulties:  Learning difficulties can be caused by hydrocephalus, infections, etc.  We obviously won't have any way of knowing whether Kaitlyn has any such problems for awhile.  Yet another "wait and see" issue.
  • Latex allergies:  Up to half of all kids with spina bifida are latex sensitive, so we will need to be very careful to avoid any products -- medical supplies, rubber bands, tires, balls and other toys, etc. -- that may contain latex. 
So there's a sum-up of the various issues we will be watching as Kaitlyn grows.  So far she seems to be doing very well, and we are so grateful for that.  As always, we thank you all for your prayers, understanding, love, and support.  Looking back on how scared we were when we first got the diagnosis, it's incredible how much more hope and optimism we have that she can have a happy and fulfilling life.  She is a beautiful little girl, and we are so glad to have her in our home.  And she is cute, right?



























15 comments:

  1. glad things are going good. nina was just looking at the pics w/ the kids, and she says, "hey, that's damon!"
    it's incredible how much she remembers. we sure miss you guys out here.
    happy halloween!!

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  2. "Cute" is an UNDERstatement! In fact, ALL the kids are darling. Good job, Kendall and Shelly. You are STILL in every prayer, and will be for always. You are an inspiration to us all. Get some rest!!!

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  3. it sounds like she's doing great!! this was a super helpful post to those of us who are not familiar with this world you've been thrown into. thanks for the update, and the positive outlook- your children are beautiful and so blessed!!

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  4. Yup. Definitely cute. And definitely a miracle baby.

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  5. So nice to get this informative update. We are happy beyond words for your family. Those pictures are just priceless. Thank you for letting us join your journey and lend our faith to this miracle. Our love to you all!

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  6. Great summary! And she is ADORABLE!

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  7. I am so happy to hear that things are going so well. We love and miss you guys and are grateful that things seem to be progressing almost better than hoped. You're in our prayers always, and we hope to meet little Kaitlyn soon. Love the pictures!

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  8. SO happy to hear an update on your sweet little girl She is a beauty. As are all your kids. Looking at the picture of all 3 of them, make me smile. They are adorable. All their cute smiles. Congrats on making it home and being all together again! Take care...

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  9. Wow--what great news! She is adorable, and it's so good to hear that she is doing well. What a blessing that you were able to have prenatal surgery.

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  10. She is adorable! I think she looks like both of the kids put together. We can't wait to hold our miracle baby again. We are so proud of all of you for your love and sacrifice for little Kaitlyn. Even Audrey and Damon had to sacrifice their mom and dad for her. We love and miss you all.

    Love,
    Mom and Dad in Hurricane

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  11. Thanks for the update. I am a regular to your blog and am glad to hear she is doing so well. She is a beautiful baby BTW and we wish you all the best!

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  12. Oh, she's just BEAUTIFUL!!! Praying that you won't need a shunt... just one less thing to worry about! (we had a revision at 6 months already:(
    Sounds like she's doing awesome!

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  13. You are such a loving family. We continue to pray for Kaitlyn.

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  14. They are all so cute! Thank you so much for the run-down and update. You've been on my mind a lot lately and I'm so glad to hear things are going so well. We miss you guys!

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  15. She is sooo cute!! So are those other babies of yours! You have a lot to worry about and watch, but I love how you guys have such an optimistic attitude and are grateful! You guys are a great example of hope and trust in Our Heavenly Father.

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