We understand that you may have a lot of questions when your child is diagnosed with tracheomalacia:
- What exactly is it?
- Is it serious?
- How will it affect my child long term?
We’ve provided some answers to those questions here, and when you meet with our Children’s Hospital Boston experts, we can explain your child’s condition and treatment options fully.
What is tracheomalacia?
Tracheomalacia is the condition that results when the cartilage that goes around the trachea isn’t strong enough to fully support it. This means that when your child exhales, the trachea narrows so much that it may feel hard to breathe.
How dangerous is it?
It depends. Most children experience mild tracheomalacia that they outgrow by the time they’re 2; but for some, it can be life-threatening and require immediate intervention to allow your child to breathe regularly again. Your child’s doctor will be able to provide more information about your child’s situation, and make sure you know everything you need to know.
Is it always associated with another condition?
No. Tracheomalacia is often seen along with esophageal atresia with or without tracheoesophageal fistula, but it can sometimes occur on its own.
How common is it?
Congenital tracheomalacia that occurs without an associated condition is relatively rare. But it’s not an uncommon complication of other conditions, including esophageal atresia with or without tracheoesophageal fistula
How is it treated?
Often, congenital (present at birth) tracheomalacia will go away on its own by the time a baby is 2 or so, when the trachea has had time to grow and strengthen. Tracheomalacia may also be so mild that it doesn’t require treatment. In a small percentage of cases, it needs to be treated, usually by surgery.
What complications are associated with tracheomalacia?
Complications can range from a child choking during feeding to turning blue because his heart isn’t beating quickly enough. This is called a “blue spell,” and a child with tracheomalacia may experience them more than once.
Your child’s doctor will let you know what to do if your child should experience a blue spell, and researchers are working to identify which children might be at risk for them.
What’s the long-term outlook for a child with tracheomalacia?
Each child is different. Often, when a baby is born with tracheomalacia, it will progress for around six months, level off, and then the baby will outgrow it by the time he is 2. In other cases, the tracheomalacia isn’t outgrown, but never becomes severe enough to present a serious problem. If the tracheomalacia is severe, it may require surgery or other measures. Your child’s doctor will work with you to come up with the best treatment plan for your child.
What causes tracheomalacia?
Primary tracheomalacia means that a baby was born without any cartilage to support his trachea. Researchers are working to better understand what makes this happen.
Secondary tracheomalacia can be caused by:
- esophageal atresia
- treatment for esophageal atresia or another medical condition
- heart anomalies, such as vascular rings
- other internal structures or masses pushing on the trachea, causing it to narrow
- recurrent infection
Signs and symptoms
What are the signs and symptoms of tracheomalacia?
Each child is different, but some common signs include:
- high-pitched breathing
- rattling or noisy breathing
- constant infections in the airway, such as bronchitis or pneumonia, since the child can’t cough or otherwise clear his lungs
Sometimes a child is incorrectly diagnosed with severe asthma when he really has tracheomalacia—which is one reason why it’s important that children be seen by a doctor with lots of experience seeing children with the condition.
Q: What exactly is tracheomalacia?
A: A healthy trachea is supported by a series of “c-shaped” rings made of cartilage that help your airway to stay open during exhalation. Tracheomalacia means that these rings aren’t strong enough to keep the trachea open during exhalation, and the trachea can become so narrow that it’s hard to breathe.
Q: Is tracheomalacia life threatening?
A: Since it prevents air from reaching the lungs, it can be. But with proper recognition and monitoring, and knowing what to do when their child has an episode, it can most often be very well-managed.
Q: Does it get better on its own?
A: Often, it does. For many children born with tracheomalacia, it goes away by the time the child is 2 years old or so.
Q: What are potential complications of tracheomalacia?
A: Complications can range from a child choking during feeding to turning blue because his heart isn’t beating quickly enough. This is called a “blue spell,” and a child with tracheomalacia may experience them more than once. Researchers are working to identify which children might be at risk for these spells.
Q: What can I do to take care of my child at home?
A: You can pay attention to your child’s breathing, especially when he is active, upset, eating or having a respiratory infection. Try to keep him calm if he is having trouble breathing—panicking may make it worse.
Questions to ask your doctor
After your child is diagnosed with tracheomalacia, you may feel overwhelmed with information. It can be easy to lose track of the questions that occur to you.
Lots of parents find it helpful to write down questions as they arise–that way, when you talk to your child’s doctors, you can be sure that all of your concerns are addressed. Here are some to get you started:
- Is my child’s tracheomalacia associated with another condition?
- What’s the best treatment for my child right now?
- What is the plan for how my child’s treatment will progress?
- What does a diagnosis of a tracheomalacia mean for my child?
- How will you manage my child’s symptoms?
- What are the possible short and long-term complications of treatment?
- What is the long-term outlook for my child?
- What services are available to help my child and my family to cope?
- How much experience does this institution have with tracheomalacia?
- What else do I need to know right now?
| One patient's story:
Five weeks before his due date, Elliot Cleckler was diagnosed with esophageal atresia (EA) and tracheoesophageal fistula (TEF), an abnormal connection between the esophagus and the trachea that can cause food traveling down the esophagus or acid refluxing up from the stomach to pass into the lungs. Read more.