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What is SMA?

For Parents

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Each infant stricken with SMA, Type I is different.   We have included this only for your information.  All medical decisions should be made in conjunction with your doctor.



If you are nursing and your child begins showing signs of early fatigue, loss of weight or poor weight gain, or you feel fuller even after nursing, consult a lactation specialist. Lactation specialists are highly trained nurses specializing in breastfeeding and lactation. They may be helpful in determining optimal positioning as well as in evaluating how much milk your baby is actually consuming.



If possible, begin pumping and storing excess milk for future use. I chose to continue pumping and supplying Wyatt with breast milk even after he was unable to nurse. An electric pump is most efficient. A double electric pump, which allows you to express from both breasts simultaneously is even better. I recommend the Medela "Pump in Style", however there are many other brands available.



One option for when your baby begins having difficulty nursing is to use a supplemental nursing system.  This involves using previously expressed breast milk to supplement a typical nursing session.  Expressed milk is placed in a special bottle which is worn around the mother's neck.  A small catheter tube runs from the bottle to the breast and is secured to the nipple with a piece of tape.  As the baby latches on and begins to nurse, the natural suction draws the milk down the tube and into the baby's mouth.   Your baby will get his/her normal amount of food in less time and with less effort.   This may help your baby to conserve energy and allow more time for play and other stimulation.  It may also allow you to enjoy the closeness of nursing for a bit longer.