Medical Conditions

My Baby Was Born with a Diaphragmatic Hernia (CDH)

Medically reviewed by Dr. Michael Okonkwo, MD, FAAP · Board-Certified Neonatologist

Content reviewed against published CHOP, NIH, CDH International guidelines

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If your baby has been diagnosed with or you suspect was born with a diaphragmatic hernia (cdh), here is what the evidence says.

The short answer

Congenital diaphragmatic hernia (CDH) is a birth defect where there is a hole in the diaphragm (the muscle separating the chest from the abdomen), allowing abdominal organs to move into the chest and compress the developing lungs. CDH occurs in about 1 in 2,500 births. The severity depends largely on how much lung development was affected. CDH requires immediate intensive care after birth and surgical repair. While CDH is serious, survival rates have improved significantly with advances in neonatal care, and many CDH survivors thrive with appropriate long-term follow-up.

Key takeaways

  • Congenital diaphragmatic hernia (CDH) is a birth defect where there is a hole in the diaphragm (the muscle separating the chest from the abdomen), allowing abdominal organs to move into the chest and compress the developing lungs. CDH occurs in about 1 in 2,500 births. The severity depends largely on how much lung development was affected. CDH requires immediate intensive care after birth and surgical repair. While CDH is serious, survival rates have improved significantly with advances in neonatal care, and many CDH survivors thrive with appropriate long-term follow-up.
  • Usually normal when: Your baby had CDH repair and is recovering in the NICU with improving respiratory function
  • Call your doctor if: Your baby is turning blue, breathing very rapidly, or in obvious respiratory distress — call 911
  • Varies by age — see the age-by-age breakdown below
“Fever itself is not an illness — rather, it is a sign or symptom that the body is fighting an infection. Fever stimulates certain defenses, such as the white blood cells, which attack and destroy invading bacteria.”
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This is one of the most common questions parents ask. Searching for answers means you care.

What Parents Should Know

According to CHOP, NIH, CDH International guidelines, congenital diaphragmatic hernia (CDH) is a birth defect where there is a hole in the diaphragm (the muscle separating the chest from the abdomen), allowing abdominal organs to move into the chest and compress the developing lungs. CDH occurs in about 1 in 2,500 births. The severity depends largely on how much lung development was affected. CDH requires immediate intensive care after birth and surgical repair. While CDH is serious, survival rates have improved significantly with advances in neonatal care, and many CDH survivors thrive with appropriate long-term follow-up. At Prenatal (if diagnosed before birth), many CDH cases are diagnosed on prenatal ultrasound, allowing your medical team to plan for delivery at a center with a NICU and pediatric surgery. Prenatal indicators like lung-to-head ratio (LHR) and observed/expected LHR help predict severity. Delivery planning, discussing treatment options, and connecting with CDH family support organizations during pregnancy can help prepare you. Some severe cases may be offered fetal intervention (FETO procedure) at specialized centers. It is generally considered normal when your baby had CDH repair and is recovering in the NICU with improving respiratory function. However, you should contact your pediatrician promptly if your baby is turning blue, breathing very rapidly, or in obvious respiratory distress — call 911.

Sources: [1], [2], [3]

Normal vs. Concerning

Usually Normal
Worth Discussing
Your baby had CDH repair and is recovering in the NICU with improving respiratory function
Your baby is turning blue, breathing very rapidly, or in obvious respiratory distress — call 911
Your baby is home and growing, even if feeds are challenging and progress feels slow
Your baby has sudden severe vomiting with abdominal distension — this could indicate hernia recurrence or bowel obstruction. Seek emergency care
Your child is thriving and the CDH is being monitored at annual follow-ups
Your baby stops breathing or has an apnea episode — call 911

When to Seek Immediate Care

  • Your baby is turning blue, breathing very rapidly, or in obvious respiratory distress — call 911
  • Your baby has sudden severe vomiting with abdominal distension — this could indicate hernia recurrence or bowel obstruction. Seek emergency care
  • Your baby stops breathing or has an apnea episode — call 911

By Age

What to expect by age

Prenatal (if diagnosed before birth)

Many CDH cases are diagnosed on prenatal ultrasound, allowing your medical team to plan for delivery at a center with a NICU and pediatric surgery. Prenatal indicators like lung-to-head ratio (LHR) and observed/expected LHR help predict severity. Delivery planning, discussing treatment options, and connecting with CDH family support organizations during pregnancy can help prepare you. Some severe cases may be offered fetal intervention (FETO procedure) at specialized centers.

0-1 month (NICU stabilization)

After birth, your baby is stabilized with gentle ventilation. CDH babies are not given bag-mask ventilation (which can inflate the stomach and worsen lung compression). Once stable, surgical repair of the diaphragm is performed — the abdominal organs are moved back to the abdomen and the hole is closed, sometimes with a patch. Some babies need ECMO (extracorporeal membrane oxygenation) if their lungs cannot support adequate oxygen levels. The NICU stay can be weeks to months.

1-12 months (post-NICU)

After discharge, CDH babies need close follow-up for respiratory health, feeding and growth (many have GERD and feeding difficulties), and development. Pulmonary hypertension may persist and require ongoing medication. Hearing should be tested, as CDH babies are at increased risk for hearing loss. Many CDH babies need supplemental calories, specialized feeding techniques, or feeding tubes initially. Physical and occupational therapy support developmental progress.

1 year+

Many CDH survivors do well long-term. The underdeveloped lung continues to grow in early childhood, and respiratory function often improves. Ongoing concerns may include exercise intolerance, reactive airway disease, scoliosis (especially with patch repairs), and the possibility of hernia recurrence. Annual follow-up at a CDH-specialized clinic is recommended to monitor for these issues. Many CDH survivors lead active, healthy lives.

What to Tell Your Pediatrician

  • Describe when you first noticed was born with a diaphragmatic hernia (cdh) and how it has changed over time.
  • Note your baby's current age and which age-specific patterns you are seeing.
  • Mention if your baby is having increasing difficulty breathing or seems to be working harder to breathe.
  • Mention if your baby is not gaining weight well or is having worsening feeding difficulties.
  • Let your doctor know if you have noticed any related concerns, such as changes in feeding, sleep, or movement patterns.
  • Bring a list of any questions or observations you want to discuss at the appointment.

What Should You Do?

When to take action

Probably normal when...
  • Your baby had CDH repair and is recovering in the NICU with improving respiratory function
  • Your baby is home and growing, even if feeds are challenging and progress feels slow
  • Your child is thriving and the CDH is being monitored at annual follow-ups
Mention at your next visit when...
  • Your baby is having increasing difficulty breathing or seems to be working harder to breathe
  • Your baby is not gaining weight well or is having worsening feeding difficulties
  • You notice your child tiring easily with physical activity
  • Your child develops vomiting or abdominal pain that could indicate hernia recurrence
Act now when...
  • Your baby is turning blue, breathing very rapidly, or in obvious respiratory distress — call 911
  • Your baby has sudden severe vomiting with abdominal distension — this could indicate hernia recurrence or bowel obstruction. Seek emergency care
  • Your baby stops breathing or has an apnea episode — call 911

What You Can Do at Home

  • Keep track of when you notice was born with a diaphragmatic hernia (cdh) — noting the time of day, duration, and any triggers can help your pediatrician.
  • Remember that your baby had CDH repair and is recovering in the NICU with improving respiratory function — this is generally within the range of normal.
  • At Prenatal (if diagnosed before birth), focus on observation rather than intervention unless your pediatrician advises otherwise.
  • Follow any care instructions from your pediatrician. Keep a written log of symptoms to bring to appointments.
  • While monitoring at home, seek immediate care if your baby is turning blue, breathing very rapidly, or in obvious respiratory distress — call 911.

My Baby Was Born with a Tracheoesophageal Fistula (TEF/EA)

Tracheoesophageal fistula (TEF) and esophageal atresia (EA) are birth defects affecting the esophagus (the tube connecting the mouth to the stomach) and/or the trachea (windpipe). In EA, the esophagus does not connect to the stomach. In TEF, there is an abnormal connection between the esophagus and trachea. They often occur together and affect about 1 in 3,500 births. Surgical repair in the newborn period is the standard treatment, and most babies do well. Long-term challenges may include feeding difficulties, reflux, strictures, and tracheomalacia, but with appropriate follow-up, the vast majority of children thrive.

NICU Parent Trauma and Stress

Having a baby in the NICU is one of the most stressful experiences a parent can face. Research shows that up to 70% of NICU parents experience clinically significant anxiety or depression, and a substantial number develop PTSD symptoms. The helplessness, fear, separation from your baby, and disruption of expected parenthood are legitimately traumatic. Your pain is real and you deserve support.

I Can't Stop Worrying Something Is Wrong After the NICU

Vulnerable child syndrome describes a pattern of persistent, excessive worry about a child's health that continues long after the child has recovered from a serious illness or NICU stay. Parents may overprotect, make excessive doctor visits, and have difficulty letting their child take age-appropriate risks. This is a normal response to a traumatic experience, but when it significantly impacts daily life and the child's development, professional support can help you rebuild trust that your baby is okay.

Milestone

Month-by-Month Development

Detailed monthly development guides from birth through 24 months.

Guide

When to Call the Doctor

General guide on when to call the pediatrician, visit urgent care, or go to the ER.

Frequently asked questions

Is was born with a diaphragmatic hernia (cdh) normal?
Congenital diaphragmatic hernia (CDH) is a birth defect where there is a hole in the diaphragm (the muscle separating the chest from the abdomen), allowing abdominal organs to move into the chest and compress the developing lungs. CDH occurs in about 1 in 2,500 births. The severity depends largely on how much lung development was affected. CDH requires immediate intensive care after birth and surgical repair. While CDH is serious, survival rates have improved significantly with advances in neonatal care, and many CDH survivors thrive with appropriate long-term follow-up.
When should I call the doctor about was born with a diaphragmatic hernia (cdh)?
Your baby is turning blue, breathing very rapidly, or in obvious respiratory distress — call 911 Your baby has sudden severe vomiting with abdominal distension — this could indicate hernia recurrence or bowel obstruction. Seek emergency care Your baby stops breathing or has an apnea episode — call 911
When is was born with a diaphragmatic hernia (cdh) normal?
Your baby had CDH repair and is recovering in the NICU with improving respiratory function Your baby is home and growing, even if feeds are challenging and progress feels slow Your child is thriving and the CDH is being monitored at annual follow-ups
What causes was born with a diaphragmatic hernia (cdh)?
Congenital diaphragmatic hernia (CDH) is a birth defect where there is a hole in the diaphragm (the muscle separating the chest from the abdomen), allowing abdominal organs to move into the chest and compress the developing lungs. CDH occurs in about 1 in 2,500 births. The severity depends largely on how much lung development was affected. CDH requires immediate intensive care after birth and surgical repair. While CDH is serious, survival rates have improved significantly with advances in neonatal care, and many CDH survivors thrive with appropriate long-term follow-up. Common explanations include: Your baby had CDH repair and is recovering in the NICU with improving respiratory function. Your baby is home and growing, even if feeds are challenging and progress feels slow.
What should I mention to my pediatrician about was born with a diaphragmatic hernia (cdh)?
You should mention was born with a diaphragmatic hernia (cdh) at your next visit if: Your baby is having increasing difficulty breathing or seems to be working harder to breathe. Your baby is not gaining weight well or is having worsening feeding difficulties. You notice your child tiring easily with physical activity.
Is was born with a diaphragmatic hernia (cdh) normal at Prenatal (if diagnosed before birth)?
Many CDH cases are diagnosed on prenatal ultrasound, allowing your medical team to plan for delivery at a center with a NICU and pediatric surgery. Prenatal indicators like lung-to-head ratio (LHR) and observed/expected LHR help predict severity. Delivery planning, discussing treatment options, and connecting with CDH family support organizations during pregnancy can help prepare you. Some severe cases may be offered fetal intervention (FETO procedure) at specialized centers.
Is was born with a diaphragmatic hernia (cdh) normal at 0-1 month (NICU stabilization)?
After birth, your baby is stabilized with gentle ventilation. CDH babies are not given bag-mask ventilation (which can inflate the stomach and worsen lung compression). Once stable, surgical repair of the diaphragm is performed — the abdominal organs are moved back to the abdomen and the hole is closed, sometimes with a patch. Some babies need ECMO (extracorporeal membrane oxygenation) if their lungs cannot support adequate oxygen levels. The NICU stay can be weeks to months.
Should I go to the ER for was born with a diaphragmatic hernia (cdh)?
Seek emergency care if your baby is turning blue, breathing very rapidly, or in obvious respiratory distress — call 911, or if your baby has sudden severe vomiting with abdominal distension — this could indicate hernia recurrence or bowel obstruction. Seek emergency care. When in doubt, call your pediatrician's after-hours line for guidance.
Does was born with a diaphragmatic hernia (cdh) go away on its own?
In many cases, was born with a diaphragmatic hernia (cdh) resolves on its own, especially when your baby had CDH repair and is recovering in the NICU with improving respiratory function. By 1 year+, many CDH survivors do well long-term. The underdeveloped lung continues to grow in early childhood, and respiratory function often improves. Ongoing concerns may include exercise intolerance, reactive airway disease, scoliosis (especially with patch repairs), and the possibility of hernia recurrence. Annual follow-up at a CDH-specialized clinic is recommended to monitor for these issues. Many CDH survivors lead active, healthy lives.
CHOPNIHCDH INTERNATIONAL

References

  1. [1]Children's Hospital of Philadelphia. Congenital Diaphragmatic Hernia. CHOP
  2. [2]National Library of Medicine. Congenital Diaphragmatic Hernia. StatPearls, 2024. NIH
  3. [3]CDH International. About Congenital Diaphragmatic Hernia. CDH International

Doctor Visit Checklist

Bring this checklist to your next pediatrician visit to discuss My Baby Was Born with a Diaphragmatic Hernia (CDH).

Things to mention

  • Describe when you first noticed was born with a diaphragmatic hernia (cdh) and how it has changed over time.
  • Note your baby's current age and which age-specific patterns you are seeing.
  • Mention if your baby is having increasing difficulty breathing or seems to be working harder to breathe.
  • Mention if your baby is not gaining weight well or is having worsening feeding difficulties.
  • Let your doctor know if you have noticed any related concerns, such as changes in feeding, sleep, or movement patterns.
  • Bring a list of any questions or observations you want to discuss at the appointment.

Observations to share

  • Your baby is having increasing difficulty breathing or seems to be working harder to breathe
  • Your baby is not gaining weight well or is having worsening feeding difficulties
  • You notice your child tiring easily with physical activity

Urgent signs to report immediately

  • Your baby is turning blue, breathing very rapidly, or in obvious respiratory distress — call 911
  • Your baby has sudden severe vomiting with abdominal distension — this could indicate hernia recurrence or bowel obstruction. Seek emergency care
  • Your baby stops breathing or has an apnea episode — call 911

My notes

From ismybabyalright.com — free, evidence-based baby health guides

All content follows our editorial policy and is reviewed against published clinical guidelines.

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Bottom line

Most cases of was born with a diaphragmatic hernia (cdh) are normal. Talk to your pediatrician if your baby is turning blue, breathing very rapidly, or in obvious respiratory distress — call 911.

Trust your instincts. If something feels wrong, reach out to your pediatrician. Worrying about your baby means you care — that is a good thing.

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Vulnerable child syndrome describes a pattern of persistent, excessive worry about a child's health that continues long after the child has recovered from a serious illness or NICU stay. Parents may overprotect, make excessive doctor visits, and have difficulty letting their child take age-appropriate risks. This is a normal response to a traumatic experience, but when it significantly impacts daily life and the child's development, professional support can help you rebuild trust that your baby is okay.

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