Many babies with congenital heart conditions struggle to take in all the food by mouth that they need to grow and develop. A nasogastric (NG) or gastric (GT) feeding tube ensures your child gets the calories and nutrients they need to be healthy and strong. Although these tools may be necessary at times for nutrition and hydration, our goal is to meet the child where they are and improve oral intake.
The Cardiology Feeding Tube Wean Clinic at Cincinnati Children’s provides a personalized program for your child. We offer care in-person and virtually through telehealth. When your baby is ready to wean off their feeding tube after heart surgery, our experts create a plan tailored to your child’s age, diet and skills.
Your child’s safety is our priority. Our team of doctors and therapists helps your child develop physical coordination and swallow skills to eat and drink by mouth. When the time is right, we work together to remove the feeding tube.
Is Your Child Ready to Tube Wean?
At Cincinnati Children’s, we aim to tube wean patients before or by their first birthday. We know that tube weaning becomes more difficult as a child gets older. But, even if your child is older than one, they still might be a candidate.
To find out if your child is ready to stop using a feeding tube, our team completes a detailed assessment. We measure your child’s:
Heart stability, including:
- No symptoms of heart failure
- Stable heart rhythm
Swallowing safety and readiness, such as:
- Able to swallow safely
- Established outpatient feeding therapy
- Parental communication on therapies and education
Nutritional adequacy and hydration, including:
- Stable growth
- Nutrition-focused physical exam
- Stable reflux and bowel regimen
- Good hydration status
We also communicate with your child’s other care team members, including their primary care doctor, cardiologist, and other clinicians and caregivers involved with feedings.
Your child may be a good candidate for a tube wean if they have:
- Approval from a cardiologist, dietitian and speech therapist and are medically stable
- Good head control
- Gross motor skills to physically feed themselves
- Safe swallow skills and oral readiness
Benefits of Our Team Approach
We use a team approach to provide advanced tube weaning care for your child. Our specialists are experts in cardiology, nursing, nutrition, physical therapy, speech therapy and swallow therapy. We are licensed to provide telehealth care for patients in Indiana, Kentucky, Ohio and West Virginia.
Our robust telehealth system allows you to complete the tube weaning process from home with assistance and support from your care team.
Weaning from Home
Support and telehealth technology provide advantages while tube weaning from home, such as:
Your child remains in a comfortable environment.
- We watch and observe your child interact and eat at home through virtual visits.
- We provide tips to help you and your child be successful at tube weaning.
- We recommend certain bottles, sippy cups and spoons to help your child drink and eat by mouth.
Remote Patient Monitoring Provides Extra Support
Our Tube Wean Clinic partners with the Remote Patient Monitoring Program at Cincinnati Children’s to make it easier for you to complete tube weaning at home. When you use remote patient monitoring you receive a scale, training and 24/7 access to supportive care.
The program uses an app that allows you and your child’s tube wean care team to communicate and document your child’s daily progress. The app tracks all necessary data, such as your child’s weight, consumption and voiding.
Support from Parent Advocates
We understand that tube weaning your child can be overwhelming and stressful. We want you to know that you are not alone. We connect you with other parents who successfully completed tube weaning their own child.
Our parent advocate provides support, listens to your concerns and shares insight with you.
What to Expect
When you have an appointment with the Cardiology Tube Wean Clinic, we assess your child’s readiness to eat without a feeding tube. We provide concrete steps toward that goal. If your child has the oral skills and health to wean from the tube, we will take you through the process. If your child is not yet ready, we will give you goals and advice about next steps. We will be available to reassess your child again in the future.
Most children tube wean within two weeks, but how long the process will take depends on your child’s readiness level. Some children complete a tube wean in five or six days while others need ongoing physical and swallow therapy over several weeks.
Before the Appointment:
Our nurse will call to confirm your telehealth or in-person appointment.
- Our nurse coordinator will collect your child’s medical information and test results from you and your care team.
- Your child’s case will be discussed at a weekly meeting.
- Plan to bring your child’s feeding supplies to the appointment.
During the Appointment:
We will assess your child’s heart, nutrition and safety of swallow/oral skills.
- We will complete a medical history, physical exam, vitals and watch you feed your child.
- Your child will be seen by a doctor, nurse, registered dietitian, speech therapist and lactation specialist if needed.
- Appointments last about one hour.
- We will discuss next steps, diet changes, follow-up appointments and weekly check-ins.
After the Appointment:
We will contact your child’s referring doctor and pediatrician to summarize the appointment.
- We will follow up with you as needed.
As You Start to Tube Wean Your Child, You Can Expect:
Regular emails from us to check on your child’s progress
- To keep a daily log or use the remote patient monitoring app to track your child’s weight and how much they eat, drink and void
- Weekly check-ins as needed with phone calls and video visits, and in-person visits as needed
- Support from a parent advocate when and if you need it
What Our Families Say
Read about one parent’s experience with our tube wean clinic:
“I want you to know how truly grateful I am that you have invested your time in my son and have given him this opportunity. As a mom, you just want what’s best for your child and to give them every chance to succeed. I know he is challenging, but I do believe he will eat on his own! Thank you for believing in him and not giving up! Thank you for being interested in his future and wanting him to be successful! Thank you for being on this journey with us. I am forever thankful for each of you for all you have done for our family.”
Meet the Team
Click then scroll to meet our cardiology feeding tube wean specialists.
Contact us to learn more, schedule an appointment, or make a referral to the Cardiology Tube Wean Program at Cincinnati Children’s.
*To protect patient privacy, please limit email communication to general inquiries only. For questions about specific patients or diagnoses, please call us at the number listed above.