How To Care For CHARGE Syndrome & Incontinence

Caring for a child with CHARGE syndrome already has a lot of unique challenges to face, as symptoms can vary greatly among patients.

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Diapers and pull-ons for children ages 3+ with special needs, available through Medicaid.

Please reference your child’s insurance card!

Child's First Name
Child's Last Name
Child's Date of Birth Please provide the date of birth for the person in need of continence care supplies (yourself, your child, etc.)
Zip Code
Child's Insurance Provider Your insurance type is most frequently found at the top of your insurance card.
Name of Insurance Carrier
Member ID Your Member ID is typically found on the front of your insurance card and may be listed as Member ID, Member #, Subscriber ID, Subscriber # or Policy #. This can be a combination of letters and numbers.
Child's Medical Condition In order to receive coverage for continence care supplies, Medicaid requires a diagnosed medical condition related to your child's incontinence.
Name of Child's Medical Condition
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Because incontinence is incredibly common in children and adults with CHARGE, it can really add to the list obstacles to overcome. However, the bathroom doesn’t have to rule your child’s life. As your child grows and progresses there are a number of ways to simplify incontinence care.

How CHARGE Syndrome And Incontinence Are Linked

Incontinence is simply defined as the inability to voluntarily control urination or defecation. It can involve the inability to fully empty the bladder, not being able to physically get to the restroom in time, be caused by stress, or not feeling the urge to go.

CHARGE syndrome is a rare mutation or disorder that occurs during early fetal development. While affecting multiple organs, the CHARGE acronym comes from a few more common features seen in children.

C - Coloboma: A congenital malformation of the eye causing defects in the lens, iris, or retina. The pupil can develop a keyhole shape.

H - Heart defects 

A - Atresia of the choanae: A blockage of the nasal passage, making it difficult to breathe.

R - Retardation of growth and development

G - Genital defects or underdevelopment

E - Ear abnormalities and hearing loss.

CHARGE symptoms may greatly vary among different children from different facial features ranging from cleft lips to the absence of expression, nerve damage, kidney issues, speech issues, and more. However, the common genital defects or under development may have a role in incontinence.

Many children with CHARGE have kidney issues, such from malformations, dysfunction,  underdevelopment, and more, which can add stress to the urinary tract. Especially when hydronephrosis causes obstruction or allows for urine to backflow.

Incontinence causes also include genital defects like hypospadias in males, when the urethral opening is not at the end of the penis and needs to be corrected surgically. Underdeveloped genital systems may cause urinary issues and delay puberty.

If a child with CHARGE syndrome has never damage they may night be able to feel the urge to go until it’s too late. Also, hearing loss may lead to communication issues, so a child may not be able to communicate their need to void the bladder.

CHARGE may also cause mobility issues due to scoliosis, muscle weakness, or poor growth, so if the child feels the urge to use the restroom, they may not be able to make it in time.

Caring For A Child with CHARGE And Incontinence

Taking care of your loved one with CHARGE is no easy task, especially when paired with incontinence, but there are a few steps to simplify incontinence care to keep your child clean and comfortable.

  1. Don’t ignore the symptom. While incontinence is common among those with CHARGE, it may be treatable. Bring up incontinence symptoms with your doctor to see if it can be treated with surgery or by other means. But keep in mind, sometimes incontinence can only be managed. 
  2. Help your child live healthier with a diet full of fiber-rich fruits and vegetables and avoid common incontinence triggers such as caffeine, beverages high in sugar, and spicy foods to relieve pressure. Also, if your child is capable, light exercising can help relieve incontinence symptoms.
  3. Practice timed voiding by seeing if your child needs to use the bathroom every 2 to 3 hours instead of waiting for them to go. It’s also good to go before bedtime, after waking up, and after meals.
  4. Be prepared with incontinence products. Have enough pull-ups, chux (bed pads), sanitary wipes, clothes changes, and more to make it through the day, night, or trip. This way accidents won’t slow you down and you will be prepared to speed up the cleanup process.
  5. Don’t overpay for those incontinence supplies. Connect with an Aeroflow incontinence care specialist to qualify for incontinence products through insurance. We will ship up to 200 protective undergarments directly to your home on a monthly basis and check in to make sure those items properly suit your child’s individual needs.
  6. Offer support. Incontinence can be embarrassing and stressful for both the patient and caregiver, but it is not your child’s fault. Let them know that everything is fine and quickly get them clean and dry.

How Aeroflow Urology Can Help Your Child

If you are caring for a child with CHARGE syndrome and incontinence, Aeroflow Urology may be able to provide them with free incontinence supplies, such as diapers or underpads. 

To see if your child qualifies, fill out our form. 

Then, once approved, you'll be able to choose products from a curated shopping list, and a Continence Care Specialist will reach out to you and help you through the process. 

After you choose your child's supplies, they'll be shipped right to your home in discreet packaging.


Information provided on the Aeroflow Urology blog is not intended as a substitute to medical advice or care. Aeroflow recommends consulting your healthcare provider if you are experiencing medical issues relating to incontinence.