The Delivery and NICU Journey: Stabilization and ECMO

The transition from delivery to the Neonatal Intensive Care Unit (NICU) is a critical and highly medicalized time for a baby with CDH. Knowing what to expect can help you prepare for the environment.

Expectations in the Delivery Room

When your baby is born, the delivery room will be very different from a typical birth. To protect your baby’s fragile lungs, the medical team will take immediate action:

• Immediate Intubation: Your baby will not be allowed to cry. Crying pulls air into the stomach, which can expand the intestines in the chest and further crush the lungs. To prevent this, doctors will immediately place a breathing tube (intubation) to secure the airway ^[1].
• No Immediate Contact: Because your baby needs immediate stabilization, you likely will not be able to hold them right after birth. They will be quickly transferred to a specialized NICU team.

The First Priority: Stabilization

Once in the NICU, a second tube, a nasogastric (NG) tube, is placed in the nose to keep the stomach empty of air so it doesn’t push against the lungs ^[1].

While it may feel natural to want the hole in the diaphragm repaired immediately, the modern standard of care is to prioritize stabilization first ^[2][3]. Surgery is usually delayed for several days to allow the medical team to treat pulmonary hypertension (high blood pressure in the lungs) and ensure the baby’s heart and lungs are strong enough for anesthesia ^[3][4].

“Gentle Ventilation” and Permissive Hypercapnia

In the past, doctors used high-pressure breathing machines to force lungs open. We now know that the small, fragile lungs in CDH can be easily damaged by this approach. Today, most centers use gentle ventilation ^[5][6].

A key part of this strategy is permissive hypercapnia. This means the doctors allow the baby’s carbon dioxide (CO2) levels to be higher than normal, and their blood to be slightly more acidic ^[5][7]. This “hands-off” approach avoids the high pressures that cause lung injury. It is completely normal for the monitors to show numbers that would be concerning in a healthy baby; the team is doing this intentionally to protect the lungs.

Managing Pulmonary Hypertension

High blood pressure in the lungs is a major challenge in CDH. To help the blood vessels relax, the team may use several treatments:

• Inhaled Nitric Oxide (iNO): A gas the baby breathes in to help open the blood vessels in the lungs ^[4].
• Medications: Drugs like sildenafil, milrinone, or epoprostenol may be used to improve blood flow and support heart function ^[4][8].

When ECMO is Needed

If a baby’s heart and lungs cannot provide enough oxygen despite the best ventilation and medications, the team may recommend ECMO (Extracorporeal Membrane Oxygenation) ^[9][3].

ECMO is essentially a temporary heart-lung bypass machine. It provides life support by acting as an external heart and lung. It takes the baby’s blood out of their body, adds oxygen, removes carbon dioxide, and pumps the blood back in ^[10].

Seeing your baby on ECMO can be terrifying. You will see large tubes (cannulas) in their neck or chest moving dark red and bright red blood ^[10]. Your baby will be deeply sedated, given medications to keep them very still and comfortable ^[10][11]. While ECMO is a lifesaving “bridge” to allow the lungs time to rest, it carries risks like bleeding or neurological injury, which the specialized team will monitor for around the clock ^[12][13].