Cystic Fibrosis Can Make it Hard for Kids to Grow

Cystic fibrosis (CF) affects many parts of the body and can make it hard for kids to gain weight and grow. This happens because their bodies don’t digest or absorb food as well as other kids. If they don’t gain enough weight, they might not grow as tall as they could, which could affect their lung development.

Nutrition for kids with CF is important because their bodies need extra energy to fight lung infections and overcome digestion issues. Having this extra energy can help keep their lungs and body strong and help them to feel their best.

Checking your child’s growth at each appointment is important to make sure they are growing well. Traditionally, being at or above the 50th percentile for weight and height helps kids with CF stay healthier and have fewer lung problems and hospitalizations.

If your child isn’t growing well or getting them to eat enough is too challenging for your family,  your CF care team may bring up the option of tube feeding, including a gastrostomy tube, or G-tube for short.

Cystic fibrosis (CF) affects many parts of the body and can make it hard for kids to gain weight and grow. This happens because their bodies don’t digest or absorb food as well as other kids. If they don’t gain enough weight, they might not grow as tall as they could, which could affect their lung development. 
 
Nutrition for kids with CF is important because their bodies need extra energy to fight lung infections and overcome digestion issues. Having this extra energy can help keep their lungs and body strong and help them to feel their best. 
 
Checking your child’s growth at each appointment is important to make sure they are growing well. Traditionally, being at or above the 50th percentile for weight and height helps kids with CF stay healthier and have fewer lung problems and hospitalizations. 
 
If your child isn’t growing well or getting them to eat enough is too challenging for your family,  your CF care team may bring up the option of tube feeding, including a gastrostomy tube, or G-tube for short.

<p>Cystic fibrosis (CF) affects many parts of the body and can make it hard for kids to gain weight and grow. This happens because their bodies don’t digest or absorb food as well as other kids. If they don’t gain enough weight, they might not grow as tall as they could, which could affect their lung development.<br />
<br />
Nutrition for kids with CF is important because their bodies need extra energy to fight lung infections and overcome digestion issues. Having this extra energy can help keep their lungs and body strong and help them to feel their best.<br />
<br />
Checking your child’s growth at each appointment is important to make sure they are growing well. Traditionally, being at or above the 50th percentile for weight and height helps kids with CF stay healthier and have fewer lung problems and hospitalizations.<br />
<br />
If your child isn’t growing well or getting them to eat enough is too challenging for your family,  your CF care team may bring up the option of tube feeding, including a <b>gastrostomy tube,</b> or <b>G-tube</b> for short.</p></span>

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How To Use Navigating CF Tube Feeding

For some families, helping their child with CF eat enough high-calorie foods to support their growth can be stressful. A G-tube is a tool that can help your child to get the calories and nutrients they need to grow.

When CF care teams introduce the option of a G-tube, families typically have many questions and concerns about G-tubes and the potential impact of a G-tube on their child as well as their family. Caregivers often report considering a G-tube is a difficult decision with many pros and cons to consider.

Decision aids are tools to help people who are considering a potential health decision that has benefits as well as risks and complications, such as a G-tube.

Navigating CF Tube Feeding is a decision aid created with support from the Cystic Fibrosis Foundation and with help from caregivers of children with CF and CF specialists to help you feel more informed about G-tubes.

Navigating CF Tube Feeding has 3 modules. At the end of each module, you will be able to download your responses and questions to help guide conversations with your CF care team to make sure all your questions and concerns are addressed to help you make the best decision for your child and family.

For some families, helping their child with CF eat enough high-calorie foods to support their growth can be stressful. A G-tube is a tool that can help your child to get the calories and nutrients they need to grow. 
 
When CF care teams introduce the option of a G-tube, families typically have many questions and concerns about G-tubes and the potential impact of a G-tube on their child as well as their family. Caregivers often report considering a G-tube is a difficult decision with many pros and cons to consider. 
 
Decision aids are tools to help people who are considering a potential health decision that has benefits as well as risks and complications, such as a G-tube. 
 
Navigating CF Tube Feeding is a decision aid created with support from the Cystic Fibrosis Foundation and with help from caregivers of children with CF and CF specialists to help you feel more informed about G-tubes. 
 
Navigating CF Tube Feeding has 3 modules. At the end of each module, you will be able to download your responses and questions to help guide conversations with your CF care team to make sure all your questions and concerns are addressed to help you make the best decision for your child and family.

<p>For some families, helping their child with CF eat enough high-calorie foods to support their growth can be stressful. A G-tube is a tool that can help your child to get the calories and nutrients they need to grow.<br />
<br />
When CF care teams introduce the option of a G-tube, families typically have many questions and concerns about G-tubes and the potential impact of a G-tube on their child as well as their family. Caregivers often report considering a G-tube is a difficult decision with many pros and cons to consider.<br />
<br />
Decision aids are tools to help people who are considering a potential health decision that has benefits as well as risks and complications, such as a G-tube.<br />
 <br />
<em><b>Navigating CF Tube Feeding</b></em> is a decision aid created with support from the Cystic Fibrosis Foundation and with help from caregivers of children with CF and CF specialists to help you feel more informed about G-tubes.<br />
<br />
<em><b>Navigating CF Tube Feeding</b></em> has 3 modules. At the end of each module, you will be able to download your responses and questions to help guide conversations with your CF care team to make sure all your questions and concerns are addressed to help you make the best decision for your child and family.</p></span>

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Coming Soon

Children >11 years will be important decision-makers when considering a G-tube. Currently, this tool only focuses on caregivers of young children with CF.

We know it will be important to have a section for older kids and teenagers to learn about G-tubes, to provide guidance on how to have discussions about G-tubes with older kids, as well as information for older kids and teenagers about caring for their G-tube and concerns about body image.

Stay tuned for more age-appropriate information about G-tube decision-making soon!

If you are interested in learning more generally about G-tubes in CF care, this tool will still have useful information to consider and discuss with your care team.

<p>Children >11 years will be important decision-makers when considering a G-tube. Currently, this tool only focuses on caregivers of <b><em>young children</b></em> with CF.<br />
<br />
We know it will be important to have a section for older kids and teenagers to learn about G-tubes, to provide guidance on how to have discussions about G-tubes with older kids, as well as information for older kids and teenagers about caring for their G-tube and concerns about body image.<br />
<br />
Stay tuned for more age-appropriate information about G-tube decision-making soon!<br />
<br />
If you are interested in learning more generally about G-tubes in CF care, this tool will still have useful information to consider and discuss with your care team.<br />
</p>

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Your CF Team has Recommended A G-tube

Where are you in the decision-making process?

I am still considering G-tube placement

I have made the decision to pursue G-tube placement

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Considering a G-tube for Your Child

When I consider the option of my child with CF having a G-tube, I feel

After making the decision to pursue G-tube placement for my child with CF, I feel

Pros and Cons

Considering a G-tube is a difficult decision. For some families, it is the first difficult health-related decision they make for their child with CF. We know families have different reasons to consider a G-tube. As you are weighing the pros and cons of a G-tube for your child, rank the factors that are most important for you in making this decision.

<p>Considering a G-tube is a difficult decision. For some families, it is the first difficult health-related decision they make for their child with CF.  We know families have different reasons to consider a G-tube. As you are weighing the pros and cons of a G-tube for your child, rank the factors that are most important for you in making this decision.</p>

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We know families have different reasons for choosing to pursue a G-tube. Select which reasons were most important in guiding your decision-making for your child with CF.

<p>We know families have different reasons for choosing to pursue a G-tube.  Select which reasons were most important in guiding your decision-making for your child with CF. </p>

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Reasons I Am Considering a G-tube

Consider the benefits, advantages, or pros. How would you rank them according to how much they matter to you?

Reasons I Am Choosing a G-tube

Consider the benefits, advantages, or pros. How would you rank them according to how much they matter to you?

Reasons I Am Concerned About a G-tube

Consider the risks, disadvantages, or cons. How would you rank them according to how much they matter to you?

Concerns I still have about G-tubes

Consider the risks, disadvantages, or cons. How would you rank them according to how much they matter to you?

Are there any other reasons you are considering or concerned about a G-tube? These reasons will be included in your downloadable summary to share with your CF care team at your next visit.

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Based On Your Answers...

<p><strong>You have...</strong><br> {child_age}{wfl}{bmi}{wflorbmi} and feeding your child and mealtimes are currently {mealtimes} stressful. <br></p>

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<p><strong>The following conditions may impact your child’s nutritional status and potential need for a G-tube:</strong><br> <br> {conditions}</p>

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<p><strong>What information in this tool may be especially helpful in your decision-making:</strong><br>Information that may be more relevant to caring for a child with CF and a G-tube will be highlighted throughout the tool, especially:<br />
<br />
- {pros1}<br />
- {pros2}<br />
<br />
and your main concerns of:<br><br />
- {concern1} <br />
- {concern2}</p>

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How this tool can be helpful to you:
As a caregiver considering a G-tube, this tool will cover both the benefits and risks/complications of G-tubes as well as allow you to explore the experiences of other caregivers who navigated this decision.

<p><strong>How this tool can be helpful to you:</strong><br>As a caregiver considering a G-tube, this tool will cover both the benefits  and risks/complications of G-tubes as well as allow you to explore the experiences of other caregivers who navigated this decision.<br />
</p>

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How this tool can be helpful to you:
As a caregiver who has decided a G-tube is the best choice for your child and family, this tool will cover both the benefits and risks complications of G-tubes as well as allow you to explore the experiences of parenting a child with CF and a G-tube.

Information that may be more relevant to caring for a child with CF and a G-tube will be highlighted throughout the tool.

<p><strong>How this tool can be helpful to you:</strong><br>As a caregiver who has decided a G-tube is the best choice for your child and family, this tool will cover both the benefits and risks complications of G-tubes as well as allow you to explore the experiences of parenting a child with CF and a G-tube. <br><br>Information that may be more relevant to caring for a child with CF and a G-tube will be highlighted throughout the tool. </p>

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How this tool can be helpful to you:

Your CF team has not recommended a G-tube, but this tool can help you learn about the role of G-tubes in CF care. It will also explore reasons why your CF team might recommend a G-tube so that you will feel more prepared and knowledgeable if you and your family consider this decision in the future.

<p><strong>How this tool can be helpful to you:</strong><br />
<br>Your CF team has not recommended a G-tube, but this tool can help you learn about the role of G-tubes in CF care.  It will also explore reasons why your CF team might recommend a G-tube so that you will feel more prepared and knowledgeable if you and your family consider this decision in the future.</p>

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Tube Feeding Basics

Tube feeding is when a person receives nutrition through a tube that enters directly into the stomach.

Typically, the same supplements/formulas that your CF care team has recommended your child drink to increase their caloric intake can go through the tube. Families can also give certain blended foods, fluids, and most medications through the tube. 

Ideally, tube feeding should not replace eating by mouth. Children can eat as much as they want and also receive extra nutrition to help them grow, develop, and thrive.

Tube feeding, such as a G-tube, can be temporary. G-tubes may be used for months to years and can be easily removed when weight challenges resolve.

<p>Tube feeding is when a person receives nutrition through a tube that enters directly into the stomach.<br />
<br />
Typically, the same supplements/formulas that your CF care team has recommended your child drink to increase their caloric intake can go through the tube. Families can also give certain blended foods, fluids, and most medications through the tube. <br><br><b>Ideally, tube feeding should not replace eating by mouth.</b> Children can eat as much as they want <em>and</em> also receive extra nutrition to help them grow, develop, and thrive. <br><br />
<b>Tube feeding, such as a G-tube, can be temporary. </b>G-tubes may be used for months to years and can be easily removed when weight challenges resolve. </p>

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What is a G-Tube?

A G-tube is a medical device that creates a connection between the skin and stomach to provide nutrition, water, or medicines.

One end of the G-tube has a balloon that keeps the G-tube inside the stomach, which is located in the upper left part of the abdomen. A small hole in the balloon lets feedings enter directly into the stomach.

The other end of the tube is outside your child’s body and looks like valve on a beach ball and is commonly called a “G-button”. This valve is closed when not in use. When you need to give feeds, you open the valve and connect tubing to the G-tube to provide the feeds and remove the tubing after the feed is finished.

<p>A G-tube is a medical device that creates a connection between the skin and stomach to provide nutrition, water, or medicines.<br />
 <br />
One end of the G-tube has a balloon that keeps the G-tube inside the stomach, which is located in the upper left part of the abdomen. A small hole in the balloon lets feedings enter directly into the stomach.<br />
 <br />
The other end of the tube is outside your child’s body and looks like valve on a beach ball and is commonly called a “G-button”. This valve is closed when not in use. When you need to give feeds, you open the valve and connect tubing to the G-tube to provide the feeds and remove the tubing after the feed is finished.</p>

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Why are Tube Feedings Used in CF care?

Children with CF have calorie needs that are 1.5 to 2 times higher than those of people without CF. It can be hard for a child to eat that amount of food each day and can become stressful for families.

Even when families try everything their CF care team recommends, some kids with CF still have trouble growing. The Cystic Fibrosis Foundation (CFF) supports using tube feeding when needed to help children grow and feel their best.

According to the CFF Patient Registry, 1 in 10 children with CF will use a form of tube feeding by age 10. This means many families consider this decision for their child with CF.

<p>Children with CF have calorie needs that are 1.5 to 2 times higher than those of people without CF. It can be hard for a child to eat that amount of food each day and can become stressful for families.<br />
<br />
Even when families try everything their CF care team recommends, some kids with CF still have trouble growing.  The Cystic Fibrosis Foundation (CFF) supports using tube feeding when needed to help children grow and feel their best.<br />
<br />
According to the CFF Patient Registry, 1 in 10 children with CF will use a form of tube feeding by age 10. This means many families consider this decision for their child with CF.<br />
</p>

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Cystic Fibrosis Foundation Patient Registry 2024 Annual Data Report

<center><p>Cystic Fibrosis Foundation Patient Registry 2024 Annual Data Report</p></center>

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What are the Options for Tube Feeding in CF?

GASTROSTOMY TUBE (G-Tube)
- A soft flexible tube with a plastic “button” at the skin that enters the stomach from an incision in the abdomen. On the outside, it looks like the valve on a beach ball
- Placing a G-tube requires a surgical procedure with anesthesia
- Less visible because it can be hidden by a shirt/top
- Typically a longer-term option, but can be removed when no longer needed
- There will be a scar after it is permanently removed

<p><strong>GASTROSTOMY TUBE (G-Tube) </strong><br />
- A soft flexible tube with a plastic “button” at the skin that enters the stomach from an incision in the abdomen. On the outside, it looks like the valve on a beach ball<br />
- Placing a G-tube requires a surgical procedure with anesthesia<br />
- Less visible because it can be hidden by a shirt/top<br />
- Typically a longer-term option, but can be removed when no longer needed<br />
- There will be a scar after it is permanently removed</p>

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NASOGASTRIC TUBE (NG)
- A long, thin, flexible tube that goes in the nose and down the throat so the tip is in the stomach
- The end of the tube is taped to the cheek to hold it in place, though young children (toddler/preschoolers) can still pull the tube out (and commonly do)
- Surgery is not required
- Inserting the NG tube is uncomfortable at first but gets easier with practice. Caregivers and older children/adults can be taught how to insert the NG tube at home themselves
- It can be inserted at night for overnight tube feeding and removed during the day for school. It is visible on the face only while it is in place
- In some situations, NG feeding can be used for a period of time (usually < 6 months) before a child gets a G-tube

<p><strong>NASOGASTRIC TUBE (NG)</strong><br />
- A long, thin, flexible tube that goes in the nose and down the throat so the tip is in the stomach<br />
- The end of the tube is taped to the cheek to hold it in place, though young children (toddler/preschoolers) can still pull the tube out (and commonly do)<br />
- Surgery is not required<br />
- Inserting the NG tube is uncomfortable at first but gets easier with practice. Caregivers and older children/adults can be taught how to insert the NG tube at home themselves<br />
- It can be inserted at night for overnight tube feeding and removed during the day for school. It is visible on the face only while it is in place<br />
- In some situations, NG feeding can be used for a period of time (usually < 6 months) before a child gets a G-tube

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How do Tube Feedings Fit Into Your Child's Day?

There are two common methods of tube feeding – continuous infusion or bolus feeding.

<p>There are two common methods of tube feeding – continuous infusion or bolus feeding. </p>

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Continuous feeding: These feedings are typically given over a longer period of time, such as 6-12 hours. Many children receive continuous feedings overnight while they sleep. These feeds are given by an enteral feeding pump, which has a tube that connects a feeding bag with formula to the G-tube and has a pump mechanism to automatically move formula through the tubing at a programmable rate recommended by your CF care team. This option is most common for children and adults who eat well during the day. It is important to know that getting extra calories during the night may delay your child’s appetite for breakfast by several hours.

<p><b>Continuous feeding:</b> These feedings are typically given over a longer period of time, such as 6-12 hours. Many children receive continuous feedings overnight while they sleep. These feeds are given by an enteral feeding pump, which has a tube that connects a feeding bag with formula to the G-tube and has a pump mechanism to automatically move formula through the tubing at a programmable rate recommended by your CF care team. This option is most common for children and adults who eat well during the day. It is important to know that getting extra calories during the night may delay your child’s appetite for breakfast by several hours. </p>

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Bolus feeding: These feedings are typically given over 5-40 minutes. They can be given by gravity, meaning formula is poured into a syringe connected to the G-tube so that formula enters stomach by the force of gravity, or can also be given via the feeding pump. Your team will help determine how many bolus feeds your child will receive in a day, depending on how much your child eats or drinks at mealtimes. Bolus feeds can also be given after a meal, so that your child can still eat whatever they want at meal times but still receive enough nutrition while they are awake. Bolus feeds provide families a way to give extra nutrition when they are on the go or not sitting down for a meal.

<p><b>Bolus feeding:</b> These feedings are typically given over 5-40 minutes. They can be given by gravity, meaning formula is poured into a syringe connected to the G-tube so that formula enters stomach by the force of gravity, or can also be given via the feeding pump. Your team will help determine how many bolus feeds your child will receive in a day, depending on how much your child eats or drinks at mealtimes. Bolus feeds can also be given after a meal, so that your child can still eat whatever they want at meal times but still receive enough nutrition while they are awake. Bolus feeds provide families a way to give extra nutrition when they are on the go or not sitting down for a meal. </p>

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Talk with your CF dietitian to determine which schedule would work best for your family. This will include picking the right nutrition option for your child, including choosing between commercial formulas or blenderized diets. If you would like to watch an educational video about the different options for tube feeding, click the References tab in the top right corner.

<p>Talk with your CF dietitian to determine which schedule would work best for your family. This will include picking the right nutrition option for your child, including choosing between commercial formulas or blenderized diets. If you would like to watch an educational video about the different options for tube feeding, click the <b>References</b> tab in the top right corner.</p>

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Navigating CF Tube Feeding

This is the end of Module 1, which covered the basics about tube feeding and G-tubes.

<p>This is the end of <b>Module 1</b>, which covered the basics about tube feeding and G-tubes.<br />
</p>

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Do you have any questions about G-tubes that were not answered in Module 1?

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These questions will be included in your downloadable summary to share with your CF care team at your next visit.

<p>These questions will be included in your downloadable summary to share with your CF care team at your next visit.</p>

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<p>In the next module, you will explore the many benefits of G-tube feeding. <br />
Because you are interested in <strong>{pros1} and {pros2},</strong> there will be information covering these topics that we encourage you to explore.</p>

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In the next module, you will explore the many benefits of G-tube feeding.

<p>In the next module, you will explore the many benefits of G-tube feeding.</p>

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In the final module, you will explore the common concerns about G-tubes as well as potential concerns or complications of G-tube feedings.

<p>In the final module, you will explore the common concerns about G-tubes as well as potential concerns or complications of G-tube feedings.</p>

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<p>In the final module, you will explore the common concerns about G-tubes as well as potential concerns or complications of G-tube feedings.<br />
<br />
Because you are interested in <strong>{concern1} and {concern2}, </strong>there will be information covering these topics that we encourage you to explore.</p>

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Using Navigating CF Tube Feeding to Help Your Decision-Making

At the completion of each module in Navigating CF Tube Feeding you will be able to download a summary of your responses and questions. These summaries are meant to help guide conversations with your CF care team about the best decision for your child and family.

To review and download your personalized information and questions from Module 1, click below now. You must download your summary before proceeding to Module 2 to save your responses and questions.

<p>At the completion of each module in <b><em>Navigating CF Tube Feeding</b></em> you will be able to download a summary of your responses and questions. These summaries are meant to help guide conversations with your CF care team about the best decision for your child and family. <br />
<br />
To review and download your personalized information and questions from <b>Module 1</b>, click below now. You must download your summary before proceeding to Module 2 to save your responses and questions.<br />
</p>

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Click here to download your Module 1 summary

If you would like to read more about the research focused on nutritional care in CF, click the References tab in the top right corner. You will be able to access this resource page throughout every module.

<p>If you would like to read more about the research focused on nutritional care in CF, click the <b>References</b> tab in the top right corner. You will be able to access this resource page throughout every module.</p>

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Click here to proceed to Module 2

Cystic Fibrosis Can Make it Hard for Kids to Grow

How To Use Navigating CF Tube Feeding

Tell Us About You

Navigating CF Tube Feeding

Before using Navigating CF Tube Feeding

Discussing G-tubes in CF Clinic

Coming Soon

Ways to Support Growth In CF Care

Ways to Support Growth In CF Care

Your CF Team has Recommended A G-tube

Considering a G-tube for Your Child

When I consider the option of my child with CF having a G-tube, I feel

After making the decision to pursue G-tube placement for my child with CF, I feel

Pros and Cons

Reasons I Am Considering a G-tube

Reasons I Am Choosing a G-tube

Reasons I Am Concerned About a G-tube

Concerns I still have about G-tubes

Based On Your Answers...

Tube Feeding Basics

What is a G-Tube?

Why are Tube Feedings Used in CF care?

What are the Options for Tube Feeding in CF?

How do Tube Feedings Fit Into Your Child's Day?

Choosing the best form of tube feeding for your child?

Navigating CF Tube Feeding

Using Navigating CF Tube Feeding to Help Your Decision-Making