Nutrition for babies - CF Buzz

Nutrition is important

Diet and nutrition is important for anyone with cystic fibrosis (CF).

CF affects the digestive system in a way that makes food absorption difficult. Often what is eaten comes straight out through the bowels. This means weight can be hard to gain and keep on.

The reason this happens is because the body isn’t able to move enzymes from the pancreas (where they are created) to the intestines (where the food is). Enzymes are responsible for breaking down food that allows the body to absorb the energy and nutrients from it.

People with CF need to eat more food than others and they also need to take enzyme supplements to make up for the lack of natural ones in their digestive system.

Weight gain is vitally important for babies’ growth and development, so ensuring they get the right amount of food and enzymes is important, and will remain so for the rest of their life.

 

Breast Feeding

Breast feeding of babies with cystic fibrosis (CF) is encouraged whenever possible, but it’s not always easy, especially when you have the additional pressures of caring for your baby with CF. Your CF dietitian or a lactation consultant will be able to help if you have any concerns, or experience any problems.

Because your baby with CF needs more food than others, you may need to give them supplemental formula feeds and/or introduce solid foods early.

If your baby is being formula fed when they are diagnosed with CF, you may need to increase the energy concentration of the formula.

For any baby the aim is achieve a steady growth rate, but this can be harder for babies with CF. If your baby doesn’t maintain their growth, increasing food intake and altering their enzyme dose may be necessary.

Breast milk and appropriate enzymes (if necessary) can be enough to maintain your baby’s growth, but your CF team will let you know if you need to add in extra feeds. It may be possible to increase your milk supply, but supplemental formula will also be used.

If enzymes are needed it is important to ensure that they are given properly.

 

How do I know if my baby is getting enough from breast milk?

Your baby’s growth should be monitored regularly, weight and length checked to ensure proper growth. This will be done at CF clinics, and you can also visit an early childhood health centre and have your baby weighed and measured there.

If your baby is feeding and sleeping well, is growing and is happy and contented, then breast milk is meeting the baby’s needs.

What if my baby isn’t growing properly on breast milk?
It does not necessarily mean that there is a problem with your milk supply. Babies with CF just need more.
You can try to increase your milk supply by:

  • ensuring that your baby is properly positioned at the breast and is sucking correctly
  • increasing the frequency of feeds to every 2-3 hours while increasing your milk supply
  • ensuring that your baby finishes the first breast first and don’t change sides until the baby has finished; the “hind milk” contains more fat than the “foremilk”, which is more thirst quenching

Your dietitian, a lactation consultant or the Nursing Mothers Association will be able to help you with increasing your milk supply. They can give any other support, advice and encouragement that you might need with breast feeding.

 

What if my milk supply is good, but my baby just needs more?

Even if breast milk supply is good, some babies with CF will still need more food. If this is the case supplemental formula feeds or polyjoule syrup can be used to increase your baby’s energy and nutrient intake.
The formula may need to be made up to a more concentrated strength for the extra energy your baby needs. Your CF dietitian will be able to help you choose the right formula and strength.

 

How do I give enzymes to my baby?

Your doctor or dietitian will advise you on the amount of enzymes you should specifically give your baby, but a good guide is 5000IU per 3-5 g of fat, or about 125ml of milk.

Give enzymes in apple puree, apple gel or another soft acidic food. Always check the inside of your baby’s mouth – between the lips and gums and under the tongue for any enzymes leftover.

Try and spread the enzymes throughout the feed, but this isn’t always practical when breast feeding.

  • give half the enzyme dose at the beginning of the feed, and the other half before swapping breasts
  • if your baby only feeds from one breast, give half at the beginning of the feed, and half if the baby takes a break
  • if your baby only feeds from one side and doesn’t take a break, give all the enzymes at the start of the feed

Do not wake your baby at the end of a breast feed to give enzymes

 

Starting Solid Foods

Starting a baby with CF on solids is the same as for any other baby, but it there is often a need to start them earlier.

Babies with CF are often quite hungry and may be ready for solids earlier than usual, 3 months is a reasonable starting age, but it will depend on the individual child. From 3-6 months, solids are given to supplement the milk intake, and shouldn’t reduce the amount of milk taken.

Breast feeding or formula is still the most important source of protein and energy until the baby is about 12 months of age.

When transitioning to family foods, a good intake of milk and other dairy products is very important so encourage your child to drink milk from a cup. The change from breast or bottle feeding should be gradual.

Introducing foods to a baby with CF is the same as for other babies. Choose a feed time when your baby is not too hungry or upset to introduce solids. If your baby is very hungry try giving them some milk first, then try the solid food and finish with the rest of the milk.

A great way to add extra calories to food for people with CF is by adding things like butter, cream, cheese and oil to foods. And they always need extra salt because of their body’s inability to move salt and water into their cells.

Things to consider when starting solids:

  • start with solids at one feed per day, and offer 1-2 teaspoons only. Gradually increase the amount up to about 1 tablespoon or more
  • rice cereal, mixed with formula or breast milk are the best ways to start
  • when your baby is eating this well, add more solid feeds by trying baby rice, pureed fruit or vegetables. Only introduce one new food at a time so your baby can get used to the taste. You can add melted butter and salt to pureed vegetables to increase salt and energy intake and consider adding cream and cheese to any mashed potato or pumpkin
  • don’t worry about enzymes the first time you give your baby a new food as it is unlikely that the baby will eat much. When they are eating about a tablespoon, start enzymes with a half scoop of Creon granules in apple puree. Your doctor or dietitian will be able to advise you more on this process. As the amount of food eaten increases so will the amount of enzymes
  • between 6-9 months, a baby should gradually learn to chew and foods need to be lumpier, so mash fruits and vegetables, mince meat and give your baby finger foods such as rusks or crusts when they can hold it alone, but stay nearby when your child is eating finger foods as they may choke on lumps at first
  • by 10-12 months, most family meals should be suitable for your baby. Keep introducing new foods and increasing the amount eaten. Remember to add energy to your baby’s foods by adding butter, cream, cheese and other healthy fats to food
  • babies under 12 months old still need at least 600mL of milk as it’s the most important source of energy and protein for growing babies. Cow milk can be used for drinks from 12 months of age


Salt Supplementation in infants

All people with CF lose excessive amounts of sodium chloride (salt) in their sweat and they can dehydrate very quickly. To prevent dehydration, salt must be replaced especially during hot/humid weather.

Because babies can’t tell you directly they are thirsty or have other symptoms of dehydration, you need to be conscious of any symptoms and of the amount of salt they consuming.

Salt supplementation is especially important in breast fed babies, as breast milk contains very little salt. Babies who have formula feeds will have more salt in their feeds, but will still require more salt in their diet.

  • infants will need salt supplementation especially during hot weather; salt powder or Glucolyte is usually used
  • Your doctor or dietitian will advise you on how much salt supplement to give your baby and it should be spread throughout the day, not given in one dose
  • salt supplements have very little taste and can be added to milk, water, fruit puree or other solids
  • express breast milk into a clean sterilized bottle, and add the salt supplement for the day to the expressed milk to feed newborns. Keep the bottle in the fridge, and give small amounts of the salt supplemented milk throughout the day
  • adequate fluids throughout the day are important when the salt supplements are being given and the weather is hot. A baby that is dehydrating will be very thirsty and difficult to settle
  • try to keep your baby as cool as possible during hot weather
  • if you live in humid or tropical areas, salt supplements may be needed throughout the year

 

Common Challenges

Illness

When an infant is ill, they will lose their appetite and will unlikely feed well. When they are recovering it’s important to feed them high energy foods and remember antibiotics can affect bowel motions, so in this case loose stools may not necessarily mean an increase in enzymes is needed.

Salt replacement is also very important during times of illness.

 

Reflux

Reflux is the regurgitation of stomach contents into the oesophagus and mouth.

Symptoms include:

  • coughing after or during feeds
  • vomiting after feeds or during physiotherapy
  • a baby that is difficult to settle

The acidic stomach contents cause pain and discomfort if the valve at the opening between the stomach and oesophagus doesn’t close properly and causes a burning sensation like heart burn. This can make it very hard to put your baby down to sleep, because they’ll experience pain when not in an upright or elevated position.

This can also make doing chest physiotherapy very uncomfortable and challenging.

In young infants, reflux can lead to failure to thrive because not enough food is actually absorbed, especially when much of a feed is vomited back up, sometimes hours later. This can disrupt a healthy growth pattern.

A baby with reflux is also in danger of aspiration, which is when the baby breathes in the contents of their stomach.

If you suspect that your baby might have reflux, talk with your CF doctor. If they think reflux is the problem, thickened feeds or medications are prescribed. Raising the head of the baby’s bed can also provide relief.
Restricting the volume of feed offered, so the stomach isn’t over full, but increasing the frequency of feeds to maintain energy intake can also be helpful. Early introduction of solids may also help.



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