Congenital Diaphragmatic Hernia Clinic

If your child is diagnosed with CDH during your pregnancy, our maternal-fetal medicine specialists will coordinate care with your regular OB/GYN. You’ll have access to advanced monitoring and detailed ultrasounds to closely follow your baby’s development. Your care team will work closely with you to develop a delivery plan that prioritizes your baby’s medical needs while honoring your family’s preferences whenever it is safely possible.

Before they are born, babies with CDH are often evaluated by pediatric cardiologists to check for any heart differences and to understand how the hernia and organ compression may be affecting their heart and blood vessels.

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After delivery, your baby will be cared for by a specialized team in our Neonatal Intensive Care Unit (NICU). The NICU at OSF Children’s Hospital of Illinois is a Level IV unit, which is the highest level of care in the region, for premature or critically ill newborns.

The NICU team works with your delivery team to ensure a smooth, seamless transition after birth. Your stay will include a private room with low lighting, a couch for caregivers and NicView cameras so you can check on your baby virtually, if needed.

Sleeping rooms and dining areas are available for families who need to stay close to their baby, as well as other nearby accommodations, such as the Ronald McDonald House and Family House .

The first priority after your baby is born is keeping them safe and stable. Because CDH allows abdominal organs to move into the chest, there is less space for the lungs to grow, so many babies are born with smaller lungs and need specialized breathing support in the first days of life. Some babies may require a breathing machine, and in certain cases ECMO, to support their heart and lungs while they stabilize.

ECMO is a specialized machine that temporarily does the work of your child’s heart and lungs. The machine takes blood out of your child’s body, adds oxygen and pumps it back in. Receiving care at a hospital equipped with ECMO is critical, as it provides an added layer of support for managing complex cases like CDH.

OSF Children’s Hospital is recognized as an Extracorporeal Life Support Organization (ELSO) Center of Excellence meaning your child will receive the highest level of ECMO care available.

Throughout your baby’s treatment, we work to ensure that care and medical support do not interfere with opportunities for bonding and breastfeeding. These connections are just as important to your baby’s growth and well-being as any medical intervention.

Once your baby is stable and ready, our surgeons will repair the hernia through a carefully planned operation. During the procedure, the organs that have moved into the chest are returned to the abdomen, and the opening in the diaphragm is closed. Small openings are usually closed with stitches, while larger openings may require a patch to provide extra healing support.

Your baby will stay in the hospital after surgery while our team supports their recovery. Because their lungs are still developing, many babies will need breathing assistance for a period of time or ongoing treatment after going home.

In the early stages of recovery, babies with CDH are unable to eat by mouth. Instead, they receive personalized IV nutrition called total parenteral nutrition (TPN), which is carefully formulated and adjusted each day to meet your baby’s specific needs. As your baby becomes more stable after surgery, small feedings through a tube into the stomach are gradually introduced and increased as they are able to tolerate them.
We strongly support breastfeeding and family involvement in feeding whenever possible. As your baby grows stronger, they will slowly transition toward feeding by mouth, and our team will guide you through each step of that process.

When possible, you will have opportunities to hold and bond with your baby, participate in their daily care and help guide progress as your baby is weaned from ventilators and other medical devices. This collaborative approach helps your baby grow stronger and support their development.

Before your baby is ready to go home, we’ll check to make sure their systems are working as they should. Your care team may perform:

• EKG
• Chest X-ray
• Echocardiogram
• Hearing test

After your baby leaves the hospital, ongoing follow-up care is an important part of their development. The CDH Follow-Up Clinic provides coordinated, multidisciplinary care tailored to your child’s needs at every stage.

Your baby will have regular appointments, especially during the first few years, to monitor growth, lung and heart function, nutrition and overall development. Each visit includes a thorough review of your child’s growth and development by a team that may include dietitians, physical therapists or speech-language pathologists. This team-based approach allows all aspects of your child’s development to be assessed in one place.

When additional care is needed, we work to coordinate appointments with other specialty providers, such as cardiologists or gastroenterologists, often on the same day. This “one-stop” approach helps reduce travel and minimizes missed work or school for your family.

We partner closely with your child’s primary care provider, as well as programs such as the Division of Specialized Care for Children (DSCC), early intervention and pediatric rehabilitation in order to provide therapy, developmental support and any specialized services your child may need.

As children with CDH grow, their medical needs may change. Planning for this transition is an important part of ensuring continued health and quality of life.

Our team works with you and your child to coordinate care with adult specialists and primary care providers, making sure medical history, ongoing therapies and medications are clearly communicated to everyone involved in your child’s care. We also connect families with additional support services and statewide programs that help young adults manage complex health needs, navigate insurance and access therapy or rehabilitation services as needed.