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!