Nutrition for babies
The needs of a baby with CF can vary from those babies who don’t have CF. Here are some commonly asked questions relating to nutrition for babies.
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 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.
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:
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.
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.
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.
Do not wake your baby at the end of a breast feed to give enzymes
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:
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.
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 is the regurgitation of stomach contents into the oesophagus and mouth.
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.