Will My CDH Child Have Asthma or Need Oxygen?

Because a congenital diaphragmatic hernia (CDH) directly affects how the lungs develop before birth, many survivors do experience long-term respiratory challenges. It is very common for children who survive CDH to have asthma-like symptoms, frequent respiratory infections, or a form of chronic lung disease ^[1][2]. While many children improve as they grow and new lung tissue continues to develop, some may require supplemental oxygen in their early years, and others may need to use inhalers to help with breathing during childhood and even into adulthood.

Why Are the Lungs Affected?

In babies with CDH, the abdominal organs push up into the chest cavity during pregnancy. This crowds the developing lungs, leading to a condition called pulmonary hypoplasia, meaning the lungs are smaller and less developed than normal ^[3][2]. This underdevelopment is the primary reason CDH survivors face ongoing breathing issues. The severity of lung problems later in life is often tied to how small the lungs were at birth and whether a large patch was needed to repair the hernia ^[4][5].

Asthma-Like Symptoms and Inhalers

Many parents worry about asthma. While it may not be traditional asthma, CDH survivors frequently develop “asthma-like” symptoms such as wheezing, coughing, and shortness of breath (dyspnea).

• Obstructive lung disease: Tests measuring how well air flows through the lungs often show patterns of airway obstruction ^[5]. In this context, “obstruction” does not mean a physical blockage like a swallowed toy; it means the airways are narrowed, inflamed, or tight, making it harder to move air in and out.
• Exercise tolerance: Roughly 28% of adult CDH survivors report shortness of breath during daily activities or exercise ^[6].
• Inhalers: Because of narrowed or reactive airways, your doctor may prescribe bronchodilators (inhalers) to help open the airways during colds or when your child is active ^[5]. While these symptoms mimic asthma, they don’t always respond perfectly to traditional asthma inhalers, so finding the right treatment might require some trial and error with your child’s lung specialist.

Chronic Lung Disease and Supplemental Oxygen

Because the lungs were underdeveloped and often required aggressive breathing support (like a ventilator) after birth, some CDH survivors develop chronic lung disease (CLD). In infants, this is sometimes referred to as bronchopulmonary dysplasia (BPD).

• Oxygen needs: In the first months or years of life (typically until age 1 or 2), children with severe CLD may have chronic respiratory failure and require supplemental oxygen at home to ensure their bodies get enough oxygen to grow ^[1][2].
• Long-term outlook: Around 33% of adult CDH survivors are diagnosed with some form of chronic lung disease ^[6]. However, CLD in adulthood usually looks different than it does in babies. While a baby might need home oxygen, adult CLD is typically milder and managed with inhalers rather than oxygen tanks.

Frequent Respiratory Infections

The first few years of life are typically the most challenging for respiratory infections ^[7]. Because their lung reserve is smaller, a common cold or respiratory virus that might be mild for another child can quickly turn into a more severe infection, such as pneumonia or bronchitis, for a CDH survivor ^[8]. Preventive measures—such as standard childhood vaccines and RSV prevention shots—are strongly recommended as part of long-term care ^[1]. Eligibility for RSV prevention shots often depends on whether your child is still on oxygen or medications for their lungs, so be sure to ask your pediatrician if your child qualifies.

Other Factors That Affect Breathing

Respiratory health in CDH isn’t just about the lungs themselves. A few other conditions common in CDH survivors can influence how well they breathe:

• Chest wall deformities: Over half of CDH survivors develop chest wall issues, such as pectus excavatum (a sunken chest), which can restrict the space the lungs have to expand and lower lung capacity ^[9].
• Pulmonary hypertension: High blood pressure in the lungs (pulmonary hypertension) is a major issue in the newborn period ^[3]. While it generally diminishes or resolves in most children after age 5 ^[10], those who have persistent pulmonary hypertension may require ongoing medication ^[11].
• Gastroesophageal Reflux Disease (GERD): Severe acid reflux is present in nearly half (45%) of adult survivors ^[6]. If stomach acid is accidentally inhaled (aspirated) into the lungs, it can trigger asthma-like symptoms and recurrent lung infections.

Preparing for the Future

Because lung function can remain impaired or change as your child grows, lifelong follow-up is recommended ^[12][1]. Many children receive care through a multidisciplinary CDH clinic that includes a pediatric pulmonologist (lung specialist).

As they get older, your child will likely undergo regular pulmonary function tests (PFTs) to monitor their lung health ^[13][14]. A PFT is a painless test that involves breathing and blowing hard into a tube connected to a computer, which measures how much air the lungs can hold and how quickly the air can be exhaled. Monitoring these changes helps ensure they are on the right medications to stay active and healthy.