Nutrition is very important to help your baby grow. Babies with narrow or obstructed airways work very hard to breathe and use up a great deal of energy (calories). Without enough food to match this effort, weight loss and poor growth may create additional problems or impede progress. Your baby may be able to feed with few difficulties, or, may need lots of help. Either way, there are sure to be many concerns that are not addressed here. More information on feeding is available through Wide Smiles auto-responders.
These may be used to provide complete nutrition when the baby cannot tolerate milk feeds. A special catheter is usually placed in a large vein. This is called 'Total Parenteral Nutrition' or TPN.
Tube feeding is often used in the initial stage to provide nutrition while allowing a child to physically rest. This reduces the amount of energy these babies are required to use and reduces the amount of calories burned during feeding, thus helping to prevent weight loss or failure to thrive. These tubes can be placed via the nose (naso-gastric) or via the mouth (oro-gastric) and might also be called 'gavage feeding'. Gavage feeding can also be used during the period when normal bottle feeding is being introduced.
If the child needs tube feeding for an extended period of time, a long-term tube may be needed. This is called a Gastrostomy Tube (G-tube or even P.E.G. [percutaneous endoscopic gastrostomy] tube in some places) and is inserted through the abdominal wall into the stomach under x-ray guidance, often using a special scope through the mouth. This is considered a minor procedure and can be reversed at any time, usually as soon as the child is feeding properly by mouth. Babies can go home with this tube in place and the nurses will teach you anything you need to know to care for it properly.
Remember, if you are unsure, feel uncomfortable or are worried in any way, PLEASE ASK. It can be initially quite daunting when trying to picture your child at home with anything 'out of the ordinary'. This is perfectly normal. Just let the nurses know your concerns so extra information, support or assistance can be made available if you require it.
Bottle feeds are usually commenced gradually. Short feeding times are recommended (NO LONGER than 20-30 minutes at each session) as long periods of bottle-feeding can exhaust these children, burn calories and cause weight loss. A variety of bottles and teats is available and the Speech Therapist might also assess your baby and help to determine which feeding combination works best (however, Speech Therapist involvement may vary from place to place, country to country).
Remember again, each child is an individual and a number of products may need to be tried before you find the right combination - one that suits you and your baby best. Your Cleft Palate support organization or association may also be able to help with selection and purchase of bottles and equipment if necessary (though service may vary in different areas or countries). Some places may rely only on the services of Speech Pathologists to assist in bottle selection, feeding technique and product purchase.
It can be frustrating and exhausting for you too at feeding times. Patience, practice, time and support will help solve most difficulties. Do not be afraid to ask for help. Some mothers find it helpful to involve not only their partner, but their extended family as well. This is helpful in achieving some 'time out' for a change, especially during trying or difficult periods.
Unfortunately, if you had planned to breast-feed your child, you are most likely to find it will not be possible. This may be a huge disappointment for some mothers. While some women have successfully breast-fed children with cleft palates, the breathing problems of the Pierre Robin child, added to the large wide cleft and recessed nature of the tongue, make this all but impossible. However, if you want your baby to have the best and benefit from your breast milk, it is certainly possible to express and store your milk for tube or bottle-feedings. Many mothers have done this for short or extended periods. If you wish to do this, let the Nursing staff know. They will support your decision and help you gain assistance from a Lactation Consultant (or equivalent if available) or alternately, the La Leche League, Nursing Mothers' Association (Australia) or local breast feeding support group, if available.
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Copyright © 2000, Michelle Cruse, Last Updated - 26/01/2000 16:01:58