How is CDH diagnosed?
CDH is typically diagnosed in utero during a routine prenatal ultrasound when the ultrasound shows excess amniotic fluid and/or movement of abdominal contents into the chest cavity. If this happens, your OB/GYN will refer you to a specialty center, like The Fetal Care Center of Southern California, where they’ll perform further testing to confirm your diagnosis and develop a treatment plan.
Specialty fetal centers will use more in-depth tests to confirm your diagnosis and evaluate the current state of your baby’s CDH. The results will help determine the best path of treatment based on the type of CDH, lung growth and location of abdominal organs. Follow-up tests can include:
- Fetal ultrasound to view overall anatomy and CDH measurements to determine severity
- Fetal echocardiogram to check for heart abnormalities
- Fetal MRI to provide additional information of the chest, abdomen and lung growth that cannot be obtained from the ultrasound
When is CDH diagnosed?
Congenital diaphragmatic hernias are typically diagnosed around 16 weeks but can be detected as early as 10-12 weeks and as late as the third trimester. In rare cases, CDH will not be discovered until after your child is born. An after-birth diagnosis is usually linked to small or Morgagni-type CDH that causes difficulty breathing.
Determining the Severity of CDH
The level of severity of a baby’s CDH is determined by the degree of pulmonary hypoplasia. Different measurements of your baby’s lungs can help determine the extent of pulmonary hypoplasia and the severity of their CDH. In addition, when the liver has moved into the chest, this causes less room for the lungs to grow. This usually results in more severe pulmonary hypoplasia or underdevelopment of the lungs.
Measurements used to determine lung size include:
- Lung to head circumference ratio (LHR)
- Lung area to head circumference observed to expected (O/E LHR)
- Total fetal lung volume (TFLV)
- Total fetal lung volume observed to expected (O/E TFLV)
Based on the measurements, specialists will grade the severity as mild, moderate or severe. Typically, LHR values less than 1.0 (or O/E LHR <25%) are correlated with more severe versions of CDH.
The severity of your baby’s condition along with the type of CDH (left or right side) will help our specialists determine the best treatment plan for your baby.
Right versus Left Congenital Diaphragmatic Hernia
The defect in your baby’s diaphragm can be located on the left or the right side.
Left-sided CDH, caused by a hole on the left side of the diaphragm, allows the stomach, intestines, spleen, kidneys and occasionally the liver to move into the baby’s chest. Left-sided CDH is more common than right-sided and may be less severe with a reduced chance of the liver migrating into their chest. Right-sided CDH, caused by a hole on the right side of the diaphragm, has a higher chance of movement of the liver into the chest.
However, in either condition, the movement of the liver into the chest causes a greater negative impact on your baby’s lung development. It is important that your baby, regardless of which CDH they have, has a fetal care team to ensure the best outcomes for them after birth.
Prognosis for Babies with CDH
Outcomes for babies with CDH depend on a number of factors, including:
- Liver herniation
- Left-sided or right-sided CDH
- Other birth defects such as a heart condition
- Premature birth
- Pulmonary hypoplasia
While plenty of children diagnosed with CDH will go on to live typical lives after surgery, all children with CDH require long-term follow-up care to ensure the best outcomes. Some long-term complications that are common in children with CDH include respiratory issues, gastrointestinal issues, skeletal developmental delays and recurrence of the diaphragmatic hernia. Learn more about the long-term management of CDH.
CDH Surgical Outcomes
Surgery is the only option when it comes to repairing your baby’s congenital diaphragmatic hernia. However, surgery is not the only postnatal treatment your baby will undergo. In addition to CDH surgical repair, treatment options can include the NICU, a ventilator and/or ECMO. Learn more about CDH treatment.
Your baby might not need all these treatments, but it’s vital that they have immediate access to them if necessary. Your baby’s outcomes will be directly related to their access to proper care after birth. That is why it’s important you deliver your baby in a hospital that can provide this type of postnatal care.
No other hospital in the region is prepared to meet this challenge like CHOC. We proudly offer the only Surgical NICU on the West Coast, providing highly specialized care for babies who need surgery. Our Surgical NICU brings every member of the care team together to follow a coordinated plan for babies, and provide a seamless experience for families. This coordinated effort is backed by national-level research and quality improvement efforts, all of which has led to better patient outcomes.
Nationally, more than 70% of children born with CDH survive. At CHOC, we have an 88% survival rate for babies with CDH, exceeding national benchmarks.
CDH Diagnosis at CHOC
During your first appointment at The Fetal Care Center of Southern California, you’ll undergo testing to confirm your baby’s CDH diagnosis and determine the specifics of your baby’s condition. On that same day, you’ll also have a consultation with a team of specialists to talk through your baby’s diagnosis and provide your family with comprehensive educational resources. For CDH, your specialists may include a pediatric thoracic surgeon, neonatologist and perinatologist.
After your initial appointment, our team of experts will develop a comprehensive treatment plan for you and your baby that will identify prenatal interventions, safe delivery and CDH surgical treatment after birth.
With our state-of-the-art fetal care center, our goal is to give you peace of mind and provide high-quality multidisciplinary treatment. To make things easier, all appointments will take place in one centralized location, and our nurse coordinator will be your single point of contact to help organize all care and treatment for you and your baby. Schedule a consultation to meet with our team of CDH specialists.