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Infants

A lot of things happen in a child’s first year of life.  For children with spina bifida, the first year can be even busier than that of a typical child.  Here you will find some of the issues you may encounter during those first 12 months.

Skin Breakdown (Diaper Rash)

Even before you leave the hospital, skin breakdown can be a problem.  A combination of antibiotics and loose stool can cause tender skin, sores, and fungal infections.  Throw out the Desitin, because you will need some heavy duty creams to combat this type of rash.  ILEX is a glue-like product that comes in a tube.  It is gummy and sticky, and is meant to be left on until it naturally wears off.  Calmoseptine has a creamy texture and works well not only on diaper rash, but on pressure sores from orthotics as well.  Nexcare No Sting Liquid Bandage Spray is a great product that creates a clear barrier on the skin.  Spray it on and let it dry for 30 seconds.  It will stay on for days.  Maalox can also be applied to the rash with a cotton ball to help neutralize acid and cool the skin.  Never wipe a bottom with diaper rash- try to dab.  Use plain water instead of baby wipes, or you can use cotton balls soaked in mineral oil.  In extreme cases, have your doctor prescribe Alcortin gel.  It is an anti-fungal, anti-bacterial, anti-inflammatory that works wonders.

Orthopedic Surgeries and Casting

Many infants with spina bifida are also born with clubbed feet.  Serial casting and/or heel cord tendon release is used to bring the feet and legs back into a good position for standing.  Serial casting involves manipulating the leg into position, and then putting it into a cast to help it stay that way.  You will have frequent returns to the orthopedic surgeons office as they cut off each cast a week or two later and apply a new one.  The foot gradually moves into position as it grows.  Other orthopedic surgeries may also be needed in the future, as your child begins to stand.  You can find out more about these surgeries on our “Surgeries and Procedures” page.

Shunt Placements and Revisions

Most shunts are placed within the first few days of an infant’s life.  However, some children do not leave the hospital with shunted hydrocephalus.  Sometimes, the ventricles are only slightly enlarged, or not enlarged at all.  In these cases, doctors will follow the child closely to make sure there is no enlargement of the ventricles over the next year.  If the ventricles start to enlarge, the doctors may decide that placement of a shunt is advisable.  It is not unusual for babies with shunts to have to have shunt revisions within the first year of placement.  An infant’s brain is so small, it is easy for the ventricles to touch the shunt and partially stop up the straw.  There is also brain matter floating around in the CSF that can get caught in the shunt like seaweed.  Signs that your infant needs a shunt revision include vomiting, trouble sleeping, fussiness, a downward cast to their eyes, and being overly sensitive to sounds.

Therapies

Infants often start out life with physical therapy for gross motor skills, occupational therapy for fine motor skills, speech therapy for feeding and vocalization, and perhaps even play therapy.  Some states have early intervention programs that can provide these services free of charge to children with disabilities from birth to age three.

Equipment

Equipment may be needed to help a child perform developmentally appropriate activities.  A Bumbo seat is often used to help infants who have problems sitting up.  Bumbo seats can be found at stores such as Target, Wal-Mart, or Babies R Us.  A more supportive seat is a corner chair.  Corner chairs are considered adaptive equipment.  They have a harness that straps the child into a seat that strengthens trunk muscles.  The adaptive crawler is a new piece of equipment that is still in the testing phase.  Margie Williams is working to develop a board that enables non-crawling infants to become mobile in a crawling position.  Standing frames are appropriate to use as you near the end of the first year.  A standing frame will support a child in a standing position.  This helps muscle and bone development, puts them in an age appropriate posture, and increases self esteem.  Standing frames often have trays that allow a child to eat or do activities while standing.  You can also find examples of these pieces of equipment on our “Equipment” page.

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