Congenital Diaphragmatic Hernia Program

What To Expect

Prenatal Care

If a prenatal ultrasound shows that your baby has a congenital diaphragmatic hernia (CDH), our Fetal Care and Treatment Center will do a full assessment of their condition. We monitor your baby’s health throughout your pregnancy. We work closely with your birth hospital to plan and prepare for the special care your baby will need once they are born.

See what to expect at a visit to the Fetal Diagnosis Program. 

Hospital Care

After your baby’s birth, a coordinated team of surgeons, neonatologists, cardiologists, pulmonologists, pediatric intensivists and nutritionists will care for 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 well and give them the very best care.

  • Within a few hours of birth, our transport team will bring your baby safely to Seattle Children’s. We were the first children's hospital on the West Coast to offer mobile extracorporeal membrane oxygenation (ECMO) for babies who need help from a machine to do the work of their heart and lungs.
  • Your newborn will receive care in our Level IV Neonatal Intensive Care Unit (NICU) from a team that is skilled and equipped to care for the sickest babies.
  • During your baby’s hospital stay, our 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.
  • You are part of our team, and we work hard to keep you informed. As soon as it is medically safe, you can touch, talk to and hold your baby. When your baby is stable, we welcome you to take part in their care.
  • Each week, the CDH team checks all babies in the hospital with CDH to help make decisions about their treatment and provide consistent care. The team includes providers who cared for your baby during pregnancy and those who will provide long-term follow-up care.
  • Your baby may have surgery to repair their CDH a few days after birth or weeks later. The timing depends on what is safest for your baby. We are the only children's hospital in our region skilled and equipped to repair a CDH while a baby is on ECMO.
  • After surgery, your child will continue to receive the highest level of care in our NICU.
  • When your baby no longer needs a ventilator and is stable, they will move out of the NICU to a hospital room on the medical unit. There we will work on feeding skills, weight gain and helping them breathe without extra oxygen.
  • Each child’s recovery is different. Your baby’s hospital stay may be a couple of weeks or several months.

Read more about:

Follow-up Care at the CDH Clinic

A few weeks after your baby goes home from the hospital, we will see them in our CDH follow-up clinic at Seattle Children’s hospital campus. To provide complete care, we create a follow-up plan and a schedule that is right for your child.

Read more about follow-up care as your child grows and how we treat ongoing health issues that affect some children born with a CDH.

  • Before your appointment
    • Gather all print or electronic copies of imaging studies or other exams related to your child's condition that were done outside of Seattle Children's. Our nursing team can help you get this information to us so we can review it before your child’s visit.
    • Learn more about what to do before your appointment.
  • How often will my child visit the clinic?
    • Most babies are seen frequently at first, depending on how much feeding and breathing support they have when they first go home.
    • Over time, your child may only need to come for a yearly check-up. Others may have clinic visits more often.
  • How long is a clinic visit?

    You can expect to spend 60 to 90 minutes meeting with your child’s medical team. You may be at Seattle Children’s longer, depending on the types of imaging scans or other tests your child needs.

    Please bring books, toys and snacks with you.

  • What can I expect during a clinic visit?

    Care at the CDH follow-up clinic depends on your child’s age and condition. Our team of experts will:

    • Ask you and your child about their health
    • Examine your child
    • Do needed tests or schedule them for later
    • Answer your questions

    Some children will have no long-term problems. But many children born with a CDH need care until their teen years or longer.

  • Who will see my child?

    We see your child as a team, so you only need to share your family’s story once. This also ensures we are all on the same page. It makes for a shorter day for your family, rather than having a series of separate visits.

    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 the following:

    • Surgeon
    • Lung health specialist (pulmonologist)
    • Heart specialist (cardiologist)
    • Speech and language pathologist who evaluates feeding and swallowing
    • Registered dietitian

    As needed, we refer you to Seattle Children’s providers for occupational therapy, nutrition, neurodevelopmental and other support.

  • What should I bring?
    • Clinic notes or reports about treatments given outside of Seattle Children’s
    • Your child’s medicines and medical equipment
    • Forms that providers need to sign, such as school forms
    • Imaging or study results done outside of Seattle Children’s, like imaging studies, growth charts, reports of blood work or other tests
  • What if I need to cancel or reschedule an appointment?

    Call 206-987-0708, option 1 as soon as possible. 

  • Directions, parking and entering
    • Find our location.
    • Arrive 15 minutes before your appointment to allow time for registration.

More information

For more information on visiting Seattle Children’s clinics, please see Your Child’s Clinic Visit.

Paying for Care

Learn about paying for care at Seattle Children’s, such as insurance coverage, billing and financial assistance.

Contact Us

Prenatal care

Request a second opinion

  • We offer virtual second opinion consultations. Call 206-987-5629 or email the CDH Program. A member of our team will contact you within 2 business days to begin coordinating your consultation.

Follow-up care during childhood

If your child needs follow-up care, contact our CDH Program at 206-987-0780. You do not need a doctor’s referral.

The CDH follow-up care clinic is located at Seattle Children’s hospital campus.

Telemedicine at Seattle Children’s

We offer telehealth visits to families across our region (Washington, Alaska, Montana and Idaho). Learn more about phone and video appointments.