What Do Parents Need to Know About Home Care for babies with CDH?

Brought your baby back home after Congenital Diaphragmatic Hernia (CDH) surgery? Congratulations.

But now we’re sure you have a lot of questions, concerns, and, let’s be honest, some anxiety too.

How do you manage breathing issues? What about feeding? And will your child be able to live a normal life?

These are all valid concerns. And the reality is that CDH care doesn’t stop after surgery.

But with the right knowledge and preparation, you can confidently manage your child’s care at home.

We’ve broken down everything you need to know about Congenital Diaphragmatic Hernia care at home.

What is CDH? Why Does It Matter?

Congenital Diaphragmatic Hernia (CDH) happens when a baby is born with a hole in the diaphragm, which is the muscle that separates the chest from the abdomen.

This allows organs like the stomach, intestines, and liver to push into the chest, affecting lung growth.

The result? Smaller, weaker lungs that make breathing more difficult.

CDH occurs in 1 in 2,500 births worldwide. It’s not rare, but it’s not widely talked about either.

Survival rates range from 70% to 80%, depending on severity and medical care.

Also, up to 70% of CDH survivors deal with long-term breathing and digestion issues.

It’s a lot to take in. But babies with CDH can live a good life with the right care.

How to Care for a Child With CDH at Home?

Bringing your baby home means taking on new responsibilities.

Here’s what to focus on:

Breathing Support

Lung development in babies with CDH varies. Some need oxygen therapy and oxygen concentrators at home, while others don’t.

What to watch for:

•         Fast breathing (more than 60 breaths per minute)
•         Flaring nostrils
•         Skin turning bluish around lips or fingers

What helps:

•         Keeping your child away from smoke, dust, and pollution
•         Using humidifiers to ease breathing
•         Learning CPR, just in case

In India, air pollution is a major concern. If you live in a polluted area, consider air purifiers and limit outdoor exposure on bad air days.

You can check out our wide range of oxygen machines, portable O2 concentrators, and home oxygen machines on our website. You can also reach out to us: +91 8100 334353 (Available on WhatsApp).

Feeding and Nutrition

CDH affects digestion. Many babies have acid reflux, trouble swallowing, or require a feeding tube.

What works:

•         Small, frequent meals
•         Keeping your baby upright after feeds
•         Consulting a pediatric dietitian for a personalized plan

If your child struggles with oral feeding, don’t stress. Many babies with CDH transition to normal feeding over time.

Preventing Infections

Respiratory infections are one of the biggest risks for babies with CDH. Even a mild cold can escalate quickly.

How to protect your child:

•         Stick to vaccination schedules (flu, pneumonia, and RSV shots are essential)
•         Limit exposure to crowded places
•         Enforce strict hand hygiene for family members

In India, pneumonia remains a leading cause of child mortality, with 14% of under-five deaths linked to it.

Growth & Development

Babies with CDH often have developmental delays due to prolonged hospital stays. But with the right support, they can catch up.

What helps:

•         Physiotherapy to strengthen muscles
•         Speech therapy if feeding or talking is delayed
•         Regular check-ups to monitor growth and lung function

Many parents worry: “Will my child lead a normal life?”

The truth? Many CDH survivors grow up to live healthy, active lives. Some may need extra medical care, but that doesn’t define their future.

Myths vs. Facts About CDH

Myth: CDH is a direct result of the mother’s actions during pregnancy

Fact: False. CDH is a congenital condition with no known prevention. It’s not your fault.

Myth: CDH is completely fixed after surgery.

Fact: Not exactly. Surgery repairs the diaphragm, but lung and digestive issues can persist. Long-term care is important.

Myth: Babies with CDH can’t play or exercise.

Fact: Not true. While some kids may need activity adjustments, most can lead active lives with proper medical guidance.

What Are Some of The Frequently Asked Questions About CDH?

Q. Can my child go to school like other kids?

Yes. Many CDH survivors attend school and lead normal lives. If needed, schools can accommodate breathing or dietary needs.

Q. Will my child always need oxygen concentrator therapy?

Not necessarily. Some babies with CDH outgrow oxygen machines dependency as their lungs develop.

Q. How often do we need follow-ups?

Expect regular check-ups for lung function, growth, and development, especially in the first few years.

Q. Can CDH be detected before birth?

Yes. Ultrasounds and fetal MRI scans can diagnose CDH during pregnancy. Early detection helps plan for specialized care.

Q. Where can I find support in India?

Here are some great resources:

Indian Academy of Pediatrics – Medical guidelines and expert advice

National Health Portal of India – Government-backed health information

CDH Parent Support Group – Connect with other parents navigating CDH

Takeaway

Some days will feel like wins, when your child takes their first steps, breathes easier, eats better.

Other days? They might struggle. That’s okay.

What matters is that you are your child’s biggest advocate.

Stay informed. Ask questions. Connect with other CDH parents.

Who else do you know who could benefit from this information? Share it with them. It could make all the difference.

You can reach out to us for more information and help: +91 8100 334353 (Available on WhatsApp).