Conditions

Congenital Diaphragmatic Hernia

What is a congenital diaphragmatic hernia?

A congenital diaphragmatic hernia (CDH) happens if the diaphragm does not form completely before birth. This leaves a hole between your baby’s belly (abdomen) and chest. Organs that should be in the belly go through the hole up into the chest. The condition is pronounced kun-JEN-ih-tul dy-uh-fruh-MA-tik HER-nee-uh.

A CDH can be life-threatening. Babies with a CDH have small lungs and the lung tissue itself is different. This causes breathing problems and high blood pressure in their lungs (pulmonary hypertension). Some babies with a CDH have other health problems, too.

  • A CDH is present at birth (congenital). The problem happens early in pregnancy while the diaphragm is forming. Researchers are looking at possible causes, such as certain chemicals, nutrients or changes in genes.  A CDH is not caused by something the mother did or did not do while she was pregnant.

Congenital Diaphragmatic Hernia at Seattle Children’s

Our multidisciplinary team has cared for thousands of children with CDH, from prenatal diagnosis through early adulthood. Our Congenital Diaphragmatic Hernia Program provides evidence-based care with excellent survival outcomes, even for the sickest babies. All during childhood, our follow-up care helps keep your child as healthy as possible.

Congenital Diaphragmatic Hernia at Seattle Children’s

Ongoing care, starting before birth

Summer Fannin“There is so much patience and grace at Seattle Children’s. Not only did my family start inside those walls, I also learned how to be a mom with the help of nurses, doctors and countless medical staff. I will forever be thankful.”
– Cassie Fannin, who first came to Seattle Children’s when she was pregnant with Summer.
See: After Life-Saving Surgery, Summer Overcomes the Odds

    • Our compassionate team includes newborn care specialists and pediatric experts in surgery, hearts and lungs.
    • In 2020–2021, U.S. News & World Report ranked Seattle Children’s tops in the Northwest and among the nation’s best programs in neonatology, cardiology and pulmonology.
    • We are considered a high-volume center for CDH. National studies have shown that babies with CDH have better outcomes at centers like Seattle Children’s that treat many babies with this condition.
    • Survival rates for babies we treat are significantly better than the national average.
    • Even for high-risk babies who need ECMO, our survival rate is higher than the national average. Seattle Children’s has the largest Extracorporeal Life Support Program for babies, children and teens in the Northwest. We are the only children's hospital on the West Coast to offer mobile ECMO.
    • Our pediatric surgery team is one of the most experienced in the nation, with excellent outcomes. Our rate for repeat hernia surgery for CDH patients is one of the lowest in the world.
    • In addition to the CDH core team, your child will get care as needed from experts in nutrition, social work, feeding, infant development, lactation support, emotional health and other specialties.
    • Our CDH team works with your family from pregnancy until your child transitions to adult care.
    • If an ultrasound during pregnancy shows that your baby has a CDH, our Prenatal Diagnosis and Treatment team will do a careful assessment. We work closely with your birth hospital to prepare for the special care your baby will need at birth. Our team of doctors, nurses and respiratory therapists are national leaders in safely moving fragile newborns.
    • Our Level IV Neonatal Intensive Care Unit (NICU) is skilled and equipped to care for the sickest newborns. Seattle Children’s is the first hospital in Washington to have a Level IV NICU.
    • Coordinated care continues through each step — as your baby has surgery, receives care in our hospital and comes back to Seattle Children’s for clinic visits.
    • Our CDH Program gives your family a single place to get check-ups, follow-up treatment and advice from a team of experts.
    • We take time to explain your treatment options so you can make the choices that are right for your family.
    • Our doctors, nurses, child life specialists and social workers help your child and your family through the challenges of a CDH. We connect you to community resources and support groups.
    • At Seattle Children's, we work with many children and families from around the Northwest and beyond. Whether you live nearby or far away, we can help with financial counseling, schooling for other children in the family, housing, transportation, interpreter services and spiritual care. Read about our services for patients and families.
  • Seattle Children’s leads research in the lab and in the clinic to improve care and quality of life for children born with a CDH.

    • With more than 80 other hospitals, we take part in a national registry called the CDH Study Group to gather data about CDH outcomes and improve care for patients. Rebecca Stark, director of the CDH Program, oversees Seattle Children’s participation in the registry. We have 3 active research studies.
    • Kim Riehle and Bhawna Arya are studying how to better predict CDH severity to plan the best care.
    • Stark and BreAnna Kinghorn study long-term outcomes of children with CDH.
    • We are one of the only programs in the country approved to study a liquid drug that helps ease severe breathing problems in babies on ECMO. See Experimental Lung Liquid Saves Infant’s Life

Symptoms of Congenital Diaphragmatic Hernia

This webpage describes the type of CDH most often found in newborns. Hernias in older children are less severe.

Babies with a CDH may have:

  • Serious breathing problems, starting soon after they are born
  • Increased work of breathing, for example, using belly muscles to breathe in
  • Rapid breathing
  • Fast heart rate

Breathing problems happen because:

  • Their lungs are smaller than normal.
  • Their hearts cannot pump blood easily to the lungs because the walls of the blood vessels are too thick.
  • The organs that slip through the hole between the belly and chest are pushing on their lungs.

Diagnosing Congenital Diaphragmatic Hernia

  • In most cases, doctors diagnose a CDH from an ultrasound during pregnancy. Most often, this happens between 20 and 24 weeks of pregnancy. A dedicated CDH team in our Prenatal Diagnosis and Treatment Program will help you prepare.

    We do imaging studies such as MRI (magnetic resonance imaging) and ultrasound to help us predict how sick your baby will be at the time of birth. This helps us plan for your baby’s delivery and counsel you on what to expect. Most often we do the fetal MRI soon after your baby is diagnosed and sometimes later in pregnancy.

    We will work with you to plan for a safe delivery and your baby’s transfer to Seattle Children’s. You can get to know some members of the team who will be caring for your child. At a visit to our hospital, you can see where we will care for your baby and learn about the resources we have for families.

  • Sometimes, a CDH is not diagnosed until after a baby is born. A doctor or nurse who checks your baby after birth may find:

    • Irregular chest movements with breathing trouble
    • No breathing noises on the side that is affected
    • The belly feels less full and looks flatter than normal

    Your baby may have these tests to find the cause of any breathing trouble:

    • Checking oxygen levels across the skin (pulse oximetry) and with blood tests
    • X-ray to see if organs are in the chest instead of the belly
    • An ultrasound image of your baby’s heart (echocardiography)
  • Sometimes, providers find a CDH in an older baby or a child who has had many colds or other illnesses that affect their breathing. This is less common. It requires surgery to close the hole in the diaphragm, but is much less serious than a CDH in a newborn.

Treating Congenital Diaphragmatic Hernia

At Seattle Children’s CDH Program, a coordinated team of surgeons, neonatologists, cardiologists, pulmonologists, pediatric intensivists and nutritionists will treat your child. The same team of pediatric surgeons and neonatologists will be involved in your baby’s care before their birth and throughout their hospital stay. This allows us to get to know your baby very well and give them the very best care.

  • Our CDH prenatal team includes specialists in maternal fetal medicine, surgery, neonatology, cardiology and genetics.
  • Since we do not deliver babies at Seattle Children’s, your baby will receive their first care at the hospital where they are born. We strongly advise families to have their babies at UW Medicine, located a short distance from Seattle Children’s. This allows your baby to get continuing care from the same neonatologists at UW and Seattle Children’s.
  • Right after birth, the team at UW Medicine follows national care standards that include breathing support and intravenous (IV) fluid to keep CDH babies stable.
  • Within a few hours of birth, our transport team will bring your baby safely to Seattle Children’s.
  • During your baby’s hospital stay, the surgery and neonatology teams will check your baby many times a day and discuss their progress. We carefully assess your baby to decide the best type of breathing support and the timing of surgery to fix their diaphragm. You are part of our team, and we work hard to keep you informed.
  • Each week, the whole CDH team checks all babies in the hospital with CDH to help make decisions about their treatment and provide consistent care. The CDH team includes providers who cared for your baby during pregnancy and those who will provide long-term follow-up care.
  • All during childhood, we base your child’s treatment on years of experience and the newest research on what works best and most safely.

 

Matthew Barker“We felt really loved and cared for — they explained everything so well and prepared us for what was to come. He is thriving today, thanks to the incredible care we received at Seattle Children’s over the last nine years.” ”
– Laurina Barker, mom of Matthew, born with a CDH
See: Boy Born With Severe Birth Defect Rises Up For a Brighter Future

    • We will monitor your baby closely — especially their heart and lungs — and adjust their treatment as needed.
    • Starting soon after birth, babies with a CDH need to be on a machine (ventilator) to help them breathe. We give your baby sedation to help them feel relaxed. They might be slightly drowsy or sleepy.
    • Breathing support is needed because their lungs are small and they have high blood pressure in their lungs. Your child may need to be on the ventilator for days or for weeks. It depends on when their lungs are ready to take over.
    • Once they are off the ventilator, most babies with CDH need oxygen through a tube into their nose. Some babies will still need a small amount of oxygen when they go home.
    • Babies with severe problems may need to be on a machine that does the work of their heart and lungs. This is called ECMO or extracorporeal life support (ECLS). “Extracorporeal” means outside the body. Prenatal imaging helps us predict whether your baby will be among the small number of newborns who need ECMO. Only about 15% of babies we treat need ECMO, compared to the national average of 30%.
    • Your baby’s lungs will have more space after a surgeon fixes their diaphragm and moves other organs back into their belly. This allows lung size and blood pressure in the lungs to improve over time.
    • During the time from birth until surgery recovery, most babies with a CDH get all their nutrition through an intravenous (IV) line.
    • As they recover from surgery, your baby will be fed using a tube that passes through their nose into their stomach (nasogastric tube or NG tube). Many babies need an NG tube for at least part of their nutrition, even when they are ready to leave the hospital.
    • If you are planning to breastfeed your baby, our nurses and lactation specialists will do all that we can to keep your milk flowing and to build a milk supply for your baby.
    • Some babies have problems with milk or formula flowing backwards from their stomach into their esophagus. This is called gastroesophageal reflux (GER) and could affect their lungs. If this happens, we make a small opening through the wall of your baby’s belly and place a tube into their stomach. This lets us safely feed your baby until they can eat by mouth. Reflux symptoms in most babies with CDH get much better over time.
    • When your baby is ready, our nurses and feeding therapists help with the transition to feeding by bottle or breast.
    • If it is not safe to feed your baby by mouth yet, we will teach you and your family how to care for a feeding tube at home. Almost all babies can feed by mouth within a couple of months after going home.
    • All babies with a CDH need surgery to gently move their abdominal organs down from their chest. The surgeon closes the hole in the diaphragm with stitches or a patch of synthetic material.
    • Your baby may have the surgery a few days after birth or weeks later. The timing depends on what is safest for your baby.
    • There are different ways to do the surgery. Your baby’s surgeon will talk with you about the options. We will recommend the best treatment for your child.
    • We will give your baby medicine to make them sleep without pain during the surgery (general anesthesia).
  • After surgery, your child will continue to receive the highest level of care in our Level IV Neonatal Intensive Care Unit (NICU). When your baby no longer needs a ventilator and is stable, they will move out of the NICU to a regular hospital room. There we will work on feeding skills, weight gain and helping them breathe without extra oxygen. When it is safe, we help to transition from tube feeding to feeding by mouth.

    Each child’s recovery is different. Your baby’s hospital stay may be a couple of weeks or many months. Most babies stay 8 to 10 weeks. Your baby will be ready to go home once they:

    • Breathe on their own or with a tube in their nose for a small amount of extra oxygen
    • Can gain weight without IV nutrition
  • We will help you connect with a primary care provider before your baby leaves the hospital. This helps ensure your baby gets the close follow-up they will need once they go home.

    Our nurses will help set up the supplies and equipment you need. This may include oxygen, medicine or tube feeding. You will have lots of time to practice all your baby’s care before going home.

  • A few weeks after your baby goes home from the hospital, we will see them in our CDH follow-up clinic. Most babies are seen frequently at first and less often over time. How often depends on how much feeding and breathing support they have when they first go home.

    We provide as much support as you need so you do not feel overwhelmed at home. If your baby leaves the hospital on a tube feeding and oxygen support, we help safely wean them off when they are ready.

    Some children will have no long-term problems. But many children born with a CDH need care until their teen years or longer. Our CDH Program team has the specialists your child may need to manage and prevent all the known complications related to CDH. Our team includes a surgeon, pulmonologist, nutritionist and cardiologist.

    To provide complete care for your child and family, we create a follow-up plan and a schedule that is right for your child. Some children may come only for a yearly check-up. Others may come more often.

    Our team:  

    We focus on helping you know what to expect, such as:

    • How your child's condition and surgery may affect their growth and development
    • How often your child should visit for an exam
    • What tests they may need
    • Which treatments or services may help with your child's current health concerns
    • What to watch for so any new problems can be found and treated early

    Ongoing health issues for some children include:

    • High blood pressure in their lungs: If your baby continues to have this problem when they are ready to go home from the hospital, they may need oxygen and medicines for a while. Our heart and lung specialists will make sure your child gets the care they need.
    • Gastroesophageal reflux (GER): The backward flow of stomach contents into the esophagus is common in children born with a CDH. This can be uncomfortable and make feeding harder. Reflux can also worsen some breathing symptoms. Your child may need medicine or, rarely, surgery to manage reflux.
    • Feeding problems:Our occupational therapists help babies develop feeding skills. Some babies have problems related to reflux. Many need a nose-to-stomach tube (NG tube) for at least part of their nutrition. This provides gentle, safe feedings until a child grows out of GER and learns to eat safely.
    • Heart defects, such as being born with a hole in their heart: Your child will get care from experts in our top-ranked Heart Center.
    • Frequent, serious colds: Children born with a CDH have lungs that are smaller and stiffer than normal during the first few years of life. They may be much more likely to get colds and take longer to recover than other children. We recommend special vaccines to prevent the most serious infections.
    • Asthma: Your child has a greater chance of having asthma than kids who do not have a CDH. To help prevent symptoms, avoid common irritants like smoke, dust and some animals. Our team watches for early signs of asthma to be sure it is treated correctly.
    • Curved spine (scoliosis).
    • Problems with how the chest wall forms (pectus carinatum or pectus excavatum).

    Overall outcomes for babies born with CDH are excellent. We look forward to supporting your family from the prenatal period through young adulthood. When the time comes, we help transition to adult care.

Meet Your Team

Our CDH Program leaders are:

Drs. Stark and BreAnna Kinghorn run the long-term follow-up clinic for CDH patients.

Besides caring for children born with a CDH, our leaders do research to improve care and outcomes for patients. In addition to our CDH team, your child will get care from other Seattle Children’s experts as needed.

Research and Clinical Trials

Our patients have the option to take part in research studies of promising new treatments.

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