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Tracheomalacia

  • Think about breathing in and out: When you inhale, your chest expands, and when you exhale, your chest wall contracts, to help push the air out. This action puts pressure on some internal parts of the body, such as the heart, the lungs and the trachea (windpipe).

    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.

    Tracheomalacia

    • Almost 100 percent of babies with esophageal atresia (EA) with or without tracheoesophageal fistula (TEF) have some degree of tracheomalacia.
    • Sometimes tracheomalacia can occur on its own, without another condition.
    • Tracheomalacia may be congenital (present at birth), or acquired later.
    • Tracheomalacia may be mild (requiring little to no treatment) moderate or severe. Severe tracheomalacia can be life-threatening.
    • The great majority of children with tracheomalacia will either outgrow it by the time they turn 2 or don’t have it severely enough to need surgery.

    How Boston Children’s Hospital approaches tracheomalacia

    The specialists in our Esophageal Atresia Treatment (EAT) Program are experts in recognizing, diagnosing and caring for children with tracheomalacia and other congenital or acquired anomalies involving the trachea and esophagus. Our EAT program is the world's only center offering the Foker Process—the most advanced and effective surgical treatment of esophageal atresia (EA), commonly associated with tracheoesophageal fistula (TEF).

    The Foker Process

    John Foker, MD, a pediatric surgeon from the University of Minnesota, developed a process to stimulate the upper and lower ends of the esophagus to make them grow, allowing them to then be joined together. Find out more.

    Tracheomalacia: Reviewed by Russell W. Jennings, MD

    © Children’s Hospital Boston, 2011

    Boston Children's Hospital 
    300 Longwood Avenue
    Fegan 3
    Boston MA 02115
     617-355-3529
  • 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 Boston Children’s Hospital 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.

    Causes

    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:

    • stridor
    • 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.

    FAQ

    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?
  • The first step in treating your child is forming an accurate and complete diagnosis. There are multiple ways to diagnose tracheomalacia, but the best is a procedure called a dynamic bronchoscopy.

    During a dynamic bronchoscopy, the doctor uses a thin instrument called a bronchoscope to look in your child’s airway to see whether his trachea is collapsing when he breathes out (or in).

    Other ways of diagnosing tracheomalacia include:

    • CAT (CT) scan– a non-invasive procedure that uses x-ray equipment and powerful computers to create detailed, cross-sectional images of your child's body
    • airway fluoroscopy– a type of x-ray that allows the doctor to have a more detailed look at your child’s trachea

    After we complete all necessary tests, our experts meet to review and discuss what they have learned about your child's condition. Then we meet with you and your family to discuss the results and outline the best treatment options.

    The Esophageal Atresia Treatment Program

    Read about our program, and watch some video interviews with our experts.

  • It's entirely natural that you might be concerned, right now, about your child's health; a diagnosis of tracheomalacia can be frightening. But you can rest assured that at Boston Children's Hospital, your child is in good hands. Our physicians are bright, compassionate, and committed to focusing on the whole child, not just his condition—that's one reason we're frequently ranked as a top pediatric hospital in the United States.

    The good news is that tracheomalacia often goes away on its own, as a child's trachea develops and becomes stronger. Until that time, your infant is monitored closely by his care team, and may benefit from humidified air, chest physical therapy and perhaps a continuous positive airway pressure (CPAP) device.

    But if your child is having blue spells, problems eating or episodes of choking, surgery may be necessary. In that case, the doctors have a few options.

    Tracheomalacia

    1. Removing the thymus

    During this surgery, the doctors remove the thymus gland, creating a space between the aorta and the sternum. Then the surgeon moves the aorta (main blood vessel) up and attaches it to the breast bone. This takes all the pressure off of the trachea, allowing it to open up. This surgery often takes between one and three hours.

    2. Placing a stent

    The doctor might also choose to place a stent in your child's trachea. A stent is a narrow tube that holds it open, and encourages the tissues of the trachea to grow around it. Stents are temporary, but sometimes kids need to have stents placed more than once.

    Coping and support

    No parent wants her child to be ill, and it's important to remember that you and your family aren't alone. There's a lot of support available here at Children's for you and your family, and here are some of the ways we can help:

    Patient education: From the office visit to pre-op to the recovery room, our nurses will be on hand to walk you through your child's treatment and help answer any questions you may have— How long will I be separated from my child during surgery? What will the operating room be like? They will also reach out to you by phone, continuing the care and support you received while at Children's.

    Parent to parent: Want to talk with someone whose child has been treated for tracheomalacia? We can often put you in touch with other families who have been through similar experiences and can share with you their experience at Children's.

    Faith-based support: If you are in need of spiritual support, we will help connect you with the Children's chaplaincy. Our program includes nearly a dozen clergy representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions who will listen to you, pray with you and help you observe your own faith practices during your hospital experience.

    Social work: Our clinical social workers have helped many other families in your situation. Your social worker can offer counseling and assistance with issues such as coping with your child's diagnosis, stresses relating to coping with illness and dealing with financial difficulties. 

    Visit our For Patients and Families page for all you need to know about:

    • getting to Children's
    • accommodations
    • navigating the hospital experience
    • resources that are available for your familytalking to your child about his condition
  • At Boston Children’s Hospital, we’re known for our science-driven approach. In fact, we’re home to the world's most extensive pediatric hospital research enterprise; and we partner with elite health care and biotech organizations around the globe. But as specialists in innovative, family-centered care, our physicians never forget that your child is precious, and not just a patient.

    Until recently, esophageal atresia—a condition that often occurs with tracheomalacia—was a condition with no truly satisfactory treatment options. Previous treatments involved stressful stretching of the esophagus, drastic repositioning of internal organs or using transplanted tissue to build a replacement esophagus.

    The revolutionary Foker method encourages natural growth and strengthening of a child’s existing esophagus with the end result being a normal, functioning esophagus.

    The idea

    John Foker, MD, a pediatric surgeon from the University of Minnesota, knew that a fetus’ normal esophagus develops due to the tension placed on it by growing bones. To encourage this same tension-induced elongation for children with EA following a baby’s birth, he surgically attached traction sutures to the tiny esophageal ends and increased the tension on these sutures, bit by bit. To date, all of the patients treated with this method are able to eat and swallow like other children.

    How it works

    • at least two operations are required
    • first operation attaches traction sutures to both ends of the esophagus
    • tension increases on the sutures over the course of several days or weeks (depending on length of the gap)
    • traction sutures stimulate upper and lower ends of the esophagus to grow
    • another operation removes sutures and joins esophageal ends

    Bringing the Foker process to Boston Children’s Hospital

    After inventing this process, Foker met with skepticism from his peers. Fortunately, Children’s surgeon Russell Jennings, MD, emerged as one believer. In 2009, Jennings visited Foker in Minnesota to assist him in operations employing the Foker process.

    Jennings is now putting his education to use at Children’s. Together with Bradley Linden, MD, he’s established Children’s Esophageal Advanced Treatment Center, the world’s only center offering the Foker process.

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