Until your child is around age 3 (the age by which their typical peers are usually potty trained), your primary goal is to prevent constipation. Babies who are chronically constipated build up giant colons that are much more difficult to treat later on.
Infants: The saying “breast is best” also applies to babies with Spina Bifida, particularly in helping to prevent constipation. Many moms advise nursing as long as you can to help keep stool soft. For formula-fed babies, try a “gentle” or “sensitive” formula, and avoid soy formulas and extra iron if possible because they can be very constipating.
It is normal for infants with Spina Bifida to poop all the time, especially the first few weeks. They have had surgery and antibiotics, and some babies have less anal tone. You and your child’s pediatrician and/or urologist may assess baby’s anal tone by carefully and lightly scraping something, such as a tongue depressor that has been snapped in half, around the anus to see if it “winks.” Some babies with low level lesions will have an anal wink, and many will not. Some are “wide open” (the medical term is patulous) and display a rectal prolapse, which means part of the rectum can protrude through the anus during bowel movements and when constipated.
Constant pooping as an infant or lack of sphincter tone does NOT mean that your baby will poop constantly for the rest of his/her life. (In fact, this will probably change drastically when you start feeding solids, and that’s a more difficult problem.) Keep a good barrier cream on baby’s hiney, and keep it clean as best you can. This won’t last forever.
If an infant (less than 6 months) becomes constipated, there are only a handful of options. You may ask the pediatrician or urologist about adding a probiotic, and most medical professionals will agree that it is totally safe to give infants liquid glycerin suppositories when necessary. Heads up: the solid suppositories are worthless for our babies. They pop right back out. The liquid glycerin suppositories (found in any pharmacy) work very well. Although it is generally advised to not give babies juice before 6 months, some pediatricians will advise a couple ounces per day of apple, prune, or pear juice a little sooner to help prevent constipation. Some will also recommend putting a tablespoon of dark karo syrup in one bottle per day. Just be aware that this can cause extra weight gain.
Babies: Many parents are excited to introduce baby foods as soon as possible! When the baby has SB, don’t move too fast. Wait until at least 6 months and baby is really ready to start. Introducing solids often means introducing constipation. However, there are steps you can take to minimize the problems.
Don’t even think about rice cereal. If you want to feed cereal, try oatmeal or barley instead. Or just skip straight to fruits and veggies. It’s generally advised to at first stick with “P” foods–peaches, pears, peas, prunes, etc. Limit (but you don’t have to omit) bananas because they can be constipating. Apple, prune, or pear juice can also help keep the bowels moving at this point.
When you start solids, watch closely for signs of constipation. If food alone can’t prevent it, you can introduce or continue some of the above recommendations, such as a probiotic and liquid glycerin suppositories. Anecdotally, around 8 months seems to be when many parents and their children’s doctors choose to introduce a stool softener or laxative. The most common would be Miralax. Some use Senna/Exlax instead or in addition. As always, check with your child’s doctor for recommendations.
Toddlers: For the record, we are counting “toddlers” as any 1 or 2 year old, whether or not they technically “toddle.” This is a tricky age, because you’re not quite ready for a continence routine (see Preschoolers and School Age Kids), but you are probably getting tired of the constant diaper changing and battle between constipation and blowouts. Remember your goal to prevent constipation so that future social continence will be easier to achieve. Your child’s doctor may recommend Miralax. Start slowly and use a measuring spoon to determine the amount. It will take several days to see the results, so keep a log of dosage and results. To help push more poop out all at once, ask about adding either Senna/Exlax, liquid glycerin suppositories, or Enemeez. Or you could even make your own miniature enema system to wash out the rectum once a day or as necessary. Buy a pediatric Fleet enema, dump out the solution (unless toddler is constipated, and then you could use maybe half Fleet, half water), fill with warm water and a squirt of baby soap, and get ready for it all to come back out. Sitting on a little potty might be helpful if possible.