Hanny’s Story (so far)

Hello, I am Hanny’s mom.  Hanny has a three year old brother DJ and Hanny is 9 months at this time and happens to have spina bifida.

We had a doctor who monitored baby every 3 wks using ultrasound due to my “high risk” pregnancy (from previous son’s complications). He couldn’t ever tell the gender because of many unusual things. At 22 wks the doctor sent us to a AO to see a better view and for ? he was concerned about.  This doctor told us the baby had a neural tube defect-split spine-and that you need to see a geneticist.  Still having no clue what he meant by anything he said, we didn’t hear the words ‘Spina Bifida’ until a few weeks later when the geneticist told us that the doctor believed the child had the occulta form s1-5 and prepared for us in laymens terms of how we should prepare.

Flash forward:  Since the babe was only occulta, we had her at a local hospital. Hanny was born via vertical c-section at 39 wks because she was folded breech and a lg. placental lake was present.  BONUS-She had myleomeningocele NOT occulta and it is at L2/3?– Surprise!!!!  She got her first ride to the children’s hospital a few hours away,  stitched up a day later, and day three got her VP Shunt. She came home with the O2 tank and apnea monitor from the chiari.  Luckly got rid of all that by 4 months.

Well, what does a folded breech baby with spina bifida at L2 with club feet look like? Hip dyslpasia, knee hyperexpansion (going the wrong way) and feet are in the face.  Head angled  back, arched back, bottom out, with lower limbs curved out in the same angle with her club feet in her face. I searched for it on the net and couldn’t find a picture either.  She also has the vescirial reflux and one enlarged kidney and an extra rib.

Due to her crazy position, the doctors just sent us home for a few months for her to heal from the surgeries and recommend us to prop her legs away from her body and eventually strap her legs to the crib to get them out of her face–really ???? She had to sleep on her sides and be carried over your shoulder with her legs through your underarm. The original ped. orthopedic dr. we didn’t click so we got a second opinion at Shriner’s.  So, by 6 months now, at the first visit, she got long leg fiberglass casts for her club feet in an attempt to bend her knees.  The casts lasted only a few days, tried twice and kicked them off each time.  At 7 months, Hanny had a bilateral heel tendonomy and put in a hip spica for recovery.  This helped her legs to get out her face and bend her foot so that she could continue casting.  However, the spica cast cause some concerned vomiting. She later resumed in plaster long leg casts, but still had issues eating. She had already had a few months of PT, but her shoulders and fingers just weren’t moving freely and now the vomiting. We started taking her to a chiropractor –Wow!!! Did that ever help.  Her vomiting stopped, her back is not arched, gained major core strength, sits, and she moves her hands freely, and smiles as big as ever.  Her PT is amazed.  Her chiropractor is thrilled.

Hanny is 9 months now and after 3 months of casting has neutral feet, can have a 90 degree bend in her knee-without knee surgery. She is getting her first AFO’s this week and nightime knee splints.  She will continue PT and chiro as she learns to scoot.

Hanny is on an antibiotic :(, probiotic and flax seeds, breastmilk and some table foods.  We have been advised about several of the natural remedies for holistic heatlth for normal kids, just very excited to read more about how to apply these principles to spina bifida which are all on this site! Happy to have found you all. Happy to have two adorable kids!

 

 

 

8 comments

  • Hi and welcome to our wonderful family here at SBN! We are so glad you found us. This site has some great information and a lot of families with tons of natural treatment experiences.

    It sounds like Hanny has had quite the adventure so far! I am so happy to hear that she is responding well to the chiropractic care. I am sure she continues to amaze you each and every day with her progress. And, if she is like my little girl, she does it all with a smile on her face!

    I am sure you have had quite a number of doctor visits over the past year. These can be pretty tough, especially when the patient starts to really hear and understand what the doctors are saying – “she can’t do this or that”, “she won’t ever…”. I love this poem by Shel Silverstein:

    “Listen to the Musn’ts, Child, Listen to the Don’ts
    Listen to the Shouldn’ts, the Impossibles, the Won’ts.
    Listen to the Never Haves, then Listen Close to Me,
    Anything Can Happen Child, Anything Can Be.”

  • Welcome! Your story sounds in some ways similar to ours. We were told our daughter, Claire, had meningocele but she was actually born with myleo L2/functions at L3. She was also breech and born with her feet in her face. Additionally, she has one hip dislocated and clubbed feet. It was quite a shock when she was born! She is 5 yrs now and doing really well. She wears AFOs, and can walk holding my hand or along furniture. She does still have some tightness in her hips but no where near how they used to be and her clubbed feet took a lot of work but are in a good position now. It sounds like Hanny has come a long way in 9 months! Thats wonderful that you found the chiropractor and that Hanny responds well to the sessions. Glad you found the site!

  • Welcome! What a rollercoaster you’ve been on. Sounds like things are finally settling down for you. We have never visited a chiropractor, but there is another mama on here who swears by hers. That is so great that he was able to help sweet Hanny so much!

    What Shriners do you go to?

    You mentioned an antibiotic, is this for UTIs? Quite a few of us use d-mannose in lieu of antibiotics to prevent UTIs and it also prevents antibiotic resistance.

    We are here to help. Ask away if you have any questions. We may not have the answer, but we love helping each other brainstorm solutions.

  • NOTE: Admin posted this for MamaH.

    We go to Shriners in Chicago for ortho.– LOVE THEM and her ped dev and ped urology are in Indiana 2.5 hrs away with a time change:(.

    Her urol. Dr. does medical charity work in Guatemala and authors lots of research. He is a little more open minded but I need facts to support other ideas and that is why I am looking here for help.

    I had heard about the dmannose and cranberry through alt. nurse at church as well but dont know the dosing. Shes 19#. Please guide me.

    She has always been on bif. Infintits opposite of her antibiotic. She was originally on ammox. the first 3 mos then put her on sulfatrim/bactrim for prevention of uti because of her vesc. reflux. She is not cathed. She has not had any infections to my knowledge. But haven’t wanted to change anything until she can have a real soaking bath (it’s been almost 3 months of sponge baths but used a.c. vinegar)

    We had issues with bm because the bactrim dehydrated her at night when he first switched and the casts didn’t let her wiggle. I use cod liver oil every now and then in food but a dev dr. said it was very ‘no’ because it causes aspiration (maybe she thought I was having her drink it by the gallon?) We figured out the dehydration thing and added a supp. Bottle at night and added ground flax seed to her bby food. Doing good but a little worried for when/if I wean her – not anytime soon since breastmilk is her best laxative. I am ordering the cleanse max soon since it sounds so good.

    I will add that her chiro has helped for digestion as well..even though we originally went there for her shoulder/hand movement and vomiting.

    The dr. uses cranial sacral therapy the first 5 minutes to relax/ease patient then the activator and trigger points all over. I need to ask her the other technique that she is doing on the lumbar region.

    Hanny basically had no cushion between the vertibre where her myelo was and a million muscle spasms all over. But she now can sit independently, eat, a host of other things. She does still have some discomfort along her neck where the shunt is and is continuing treatments. Hanny’s PT has been dumbfounded about her improvements in the last two months but both chiro and pt are glad to be complimenting each other…release tension and strengthen.

    One other question is how should one tactfully talk to regular Drs. using alternatives or even suggest it or even mention it. I learned very quickly last clinical who is narrow minded and who is not. But when/if there is an emergency you want them but when natural goes well you want to brag on that. Does that make any sense?

    Also, do any of you use juice therapy for bm or other things?

    We are at a point where we are comfortable with the dr visits, pt, bms and just want to keep the good balance going.

    • Claire weighs around 35 pounds and I give her a whole capsule of d-mannose–I use the solaray brand. If she starts to show any signs of a uti, I have her take spoonfuls of apple cider vinegar, soak in baths with tea tree oil, pushed wAter, and rubbed juniper berry over her bladder. So far, it’s worked without antibiotics. She did take them once for a uti before I knew about natural alternatives. At this point, I would still put her on antibiotics if the natural didn’t kick it really fast but so far it has.

      For bowels, we use senna and enemas (soon to be peristeen). Senna is maybe not the most natural supplement but it has kept her unconstipated, we have avoided miralax, and it’s offered pretty consistent results (though I still hope we can move off of it when we start the peristeen). So, overall I have been happy with it.

      We use natural alternatives mostly to support what we are doing traditionally. To answer your question about how to approach doctors with natural alternatives, I have found most doctors won’t necessarily support it but will let me do what I think is best without too much protest. At some point, I really just stopping talking to them about the different things we were trying. Of course, I do explain supplements because they do need to know if it counter acts with anything they have prescribed. But, otherwise I just keep it to myself. And it does really help if you can find a natural dr/acupuncturist etc so you are not just flying solo.

  • I would love to speak with you about your experience at Schriners in Chicago as we plan to take 9 month old Charlie there in March. Please let me know the best way to reach you! Thanks, Nadia

    • Hi Nadia,
      This group hasn’t been very active recently. MamaH should have received an email when you commented.

      In the meantime you might consider asking the same question over on the Baby Center group or on one of the Facebook groups. If you are not a member of any, let me know and I can give you some specifics.

      Take care!
      Tina

    • Hey Nadia,

      I just got an email from MamaH saying she sent you an email. So if you haven’t received it, you might check your spam folder or post again here and I can message you her email address.

      Tina

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