Early Implications of SB
NOTE: This was written during the first two years of Ren’s life. Much has changed since then, and all of these changes are reflected in the blog posts throughout this site.
Renny was a perfect baby. Quiet, slept through the night at 8 weeks of age, nursed beautifully, content, calm. The complete opposite of the twins. It was heavenly. There were some obvious implications of her spina bifida, though.
Leg Movement & Feeling
One thing I noticed about her though that was also different from my boys – and most other babies- was that she did not have the little “frog legs” that I loved so much; the curled up legs when they were cuddled up against you, or sitting in a carseat. Her legs were basically straight. They did not bend much on their own.
We had to do leg stretches with her too, to stretch out her muscles so they would not get tight, since she did not move them around herself. She could move her legs, but not much, and they were always in a more straight position when she did move them, so her hips helped her out a lot. She could move her feet, but only upward. There seemed to be a tiny bit of toe movement, but very slight.
As she grew, she was never able to sit up very straight. She found a way to “army crawl” by pulling herself along on the floor. She could not get up on her hands and knees, except a little bit with rocking back and forth, so she has never crawled (part of this MAY be due to her hip problems – see bottom of page). She also did not bear weight on her legs. If we tried to stand her, her legs would just flop. We have a stander that we strap her in which is supposed to help get her legs used to the “feeling” of weight bearing and also strengthen her leg muscles.
Besides limited movement in the limbs, most people with SB also have limited sensation, meaning they can’t “feel” normally. So, Renny most likely does not have complete feeling in her legs and feet. She might have “patchiness” – being able to feel pressure but not pain, or light touches but not pinching, and etc., or even not at all, at various places in her legs. We will not know for sure until she is older and able to tell us.
Most, if not all, individuals with spina bifida also have some sort of problems with their bladder; many need to be cathetorized because they cannot empty their bladder on their own. While in the hospital after her surgeries, the nurses and doctors seemed to think she was peeing enough to not need cathing. Back home, though, our pediatrician wanted to make sure this was true, before we assumed anything, for a bladder not being emptied well has potential to cause a lot of problems with the kidneys. So, for I think for 2 weeks we had to cathe Renny three times a day. (That was a chore trying to learn how to do that!). In the end, we were not getting enough urine from her during our cathing to show a need to continue. So, we did not need to cathe her anymore, and still do not. A great blessing for her so far, and we hope she will continue to have this ability her whole life.
She does have some constipation problems, though, and so we have had to find ways to conquer that. Now that she is older, we make sure she eats lots of high-fiber foods such as apricots, prunes, and raisins, and that helps a lot. We also have natural laxative drops (Little Tummies) that work wonders too when her bowel system needs some extra help.
And she has also had several urinary tract infections (UTIs), due to what they call her neurogenic bladder, which basically means the nerves in her bladder do not work properly, making them weaker, and causing some problems. She may have other problems too, such as not being able to feel when she has to urinate, but we may not know these until she is older as well.
Individuals with spina bifida also have a potential to have a latex allergy, so we were warned to keep anything that could possibly be latex away from her. So, what happens? When we were first sent home with the cathing equipment, a nurse from the clinic sent home LATEX gloves. Unfortunately, we did not realize this until after we had been doing several attempts of cathing her (it was difficult to do successfully at first), and after we saw a big rash forming on her abdomen. We have not had any signs of latex allergy since, but that rash is enough to confirm she has the allergy.
Her shunt is near the top of her head, and because Renny had so much hair when she was born, it was only really noticable the first few weeks of her life, when the hair had been shaved for the surgery for placement of it. Sometimes shunts can get infected or malfunction, and so we always have to watch for symptoms such as high fevers, vomiting, pain, for if it were a shunt problem, then it would need to be replaced (which means another surgery into the brain). We were fortunate (blessed) to have one of the best neurosurgeons in the country perform her surgeries, and he has told us that this shunt should last 8-10 years. So far it has been good.
Renny has a 2-3 inch scar on her back from her surgery of closing up the defect. This took a very long time to heal. A few days after being home with her it began to puss up a lot – thick yellowish stuff…gross stuff. After a couple of visits to the clinic, a skin-type-specialist nurse finally gave us some good gauze that had silver in it (we had to change it several times during the day) and after 1-2 weeks it finally healed up. She now has a raspberry type scar on her lower back.
When Renny was several months old, we started noticing some crossing of her eyes. By the time she was one, we were patching each eye each day and she had glasses. These were meant to try to correct an eye problem known as strabismis (I think – I need to check again on this). I guess this is a somewhat common problem with kids with SB, but even those without SB have it. Ultimately, it needs to be corrected with surgery, which she will be having sometime in the next couple of months. She will still need to wear glasses, though, for some farsightedness.
Renny’s most recent possibly-SB-related implication is dealing with her hips. She had shallow hip sockets, and her hip joints were not able to set in the sockets like they should; so essentially her hips were dislocated. I say possibly-SB-related because though this does happen sometimes to kids with SB, I also have an aunt (who does not have SB) who was born with a very similar hip problem, if not the same problem.
So, due to this hip issue, Renny has had two major hip surgeries to correct these problems. And due to some fractures in between and after surgeries, she has been in a hip spica cast (from toes to chest) for 5 months and will be in it for another 5 weeks – So 6 months total in the cast.
Because of all of these implications from her SB, we have since her birth had many, many doctor visits. Thankfully my husband is able to stay home while I teach, so he is able to take her and advocate for her.
It should also be noted that right after her birth, Renny failed her newborn hearing screening. We were told she could be deaf in her right ear. (Ah, another thing to worry about!). The nurse said there’s a chance it could just be due to fluid in her ear, though. After many long visits to the audiologist and after many months, it was determined that Renny can hear in both ears, but there is a slight delay in certain sound frequencies. The doctor said that many other people may have a similar delay and don’t even know it. He also said it was common with those who have hydrocephalus. To sum it up – Renny’s hearing seems to be fine. Again, God is awesome.