What to Expect When Your Baby is on ECMO for CDH

Seeing your baby on Extracorporeal Membrane Oxygenation (ECMO) for the first time can be an overwhelming experience. ECMO is the highest level of life support available in the neonatal intensive care unit (NICU). It works as an artificial heart and lung, giving your baby’s own organs time to rest and recover ^[1]. To make this possible, your baby will be connected to large tubes in their neck, remain on a mechanical ventilator ^[2], have multiple monitors attached to their head and body, and receive strong medications to keep them completely still ^[3]. Understanding what this highly controlled environment looks like beforehand can help you focus on your beautiful baby rather than being shocked by the machinery.

The ECMO Circuit and Cannulas

The most striking visual element of ECMO is the large, clear tubes—called cannulas—that connect your baby to the machine. For babies with Congenital Diaphragmatic Hernia (CDH), these are typically placed into the large blood vessels on the right side of the neck, though occasionally they are placed in other large vessels ^[1][4]. You will physically see blood continuously flowing through these lines. Dark red blood leaves the body to be oxygenated by the machine, and bright red blood is pumped back in ^[5]. The ECMO machine itself will sit right next to the bed, constantly humming and spinning to circulate the blood.

Noticeable Changes in Your Baby’s Appearance

When your baby first goes on ECMO, you will likely notice a few dramatic changes in how they look. Before ECMO, babies struggling with CDH are often pale or dusky-blue because their lungs cannot absorb enough oxygen. Once they are connected to the ECMO circuit, their blood is beautifully oxygenated, and their skin will “pink up” significantly.

You should also expect to see generalized edema, which is severe swelling or puffiness. Because the ECMO circuit requires massive amounts of fluid to operate, your baby’s body will retain a lot of water. This puffiness can make your baby look very different, which can be distressing, but it is an expected and entirely temporary side effect that will resolve as they recover. Additionally, because the ECMO circuit constantly uses up platelets and red blood cells, it is completely normal to see bags of blood or yellow platelets hanging from the IV poles for frequent transfusions.

Deep Sedation and Complete Stillness (Paralysis)

Because the cannulas are literally life-saving, it is absolutely critical that they do not shift or get pulled out. To guarantee your baby’s safety, the medical team will use strong medications to keep them deeply sedated and sleeping ^[6][7].

In addition to sedatives and pain medicines, babies on ECMO are frequently given neuromuscular blockers ^[3]. These medications temporarily paralyze the muscles so your baby cannot move, cry, or accidentally dislodge the tubes ^[6][8]. Your baby will lie completely still and their eyes will remain closed. This total stillness is intentional and necessary to protect them, though it can be very difficult for parents to witness.

The Ventilator Stays On

Even though the ECMO machine is doing the heavy lifting of oxygenating the blood and removing carbon dioxide, your baby will still have a breathing tube in their mouth or nose connected to a mechanical ventilator ^[2]. However, what the ventilator is doing changes. Instead of forcing air in to do all the breathing, it provides “gentle ventilation”—small, soft breaths designed to keep the fragile lungs open and prevent them from collapsing while they rest and heal ^[2][9].

A Network of Monitors

Your baby will be surrounded by wires and monitors tracking every aspect of their health. Alongside standard heart rate and blood pressure monitors, babies on ECMO require specialized brain monitoring. You will likely see:

• NIRS (Near-Infrared Spectroscopy) stickers: Small, colored sensor pads placed on your baby’s forehead. These measure how much oxygen is reaching their brain tissues ^[10][11].
• EEG (Electroencephalogram) wires: Small stickers or wires attached to the scalp to continuously track brain waves. Because the baby is chemically paralyzed and sedated, the care team uses EEG monitoring to check for any abnormal brain activity or “silent” seizures, which are a known risk for neonates on ECMO ^[12][13].

Timing of the CDH Repair Surgery

A common and urgent question for parents is when the actual hole in the diaphragm will be surgically repaired. Because there is no single standard approach, the timeline can vary significantly based on your baby’s stability and the hospital’s protocols ^[14]. Some surgical teams prefer to operate while the baby is still on ECMO to allow the lungs to begin expanding immediately ^[15][16]. Other centers prefer to wait until the baby’s lungs have healed enough to be taken off (decannulated from) ECMO first, as this lowers the risk of bleeding complications during surgery ^[17][18]. ECMO itself can last anywhere from a few days to several weeks, depending on how quickly the baby’s lungs respond and heal.

Nutrition and Pumping Breastmilk

While your baby is on ECMO, their digestive system needs to rest. They will not be fed by mouth. Instead, they will receive all their necessary calories and nutrition through an IV, a process called Total Parenteral Nutrition (TPN) ^[14].

Even though your baby cannot eat right now, providing breastmilk is one of the most powerful things a mother can do during this time. The medical team highly encourages mothers to pump and freeze their milk. Breastmilk acts like medicine for fragile babies, and having a frozen supply ready ensures that when your baby is stable enough to begin small tube feedings, they will have your milk waiting for them.

The Care Team Environment

The space around your baby’s bed will be incredibly crowded. In addition to your baby’s dedicated intensive care nurse, there will be an ECMO specialist stationed at the bedside 24/7 whose sole job is to manage the ECMO circuit ^[19][20].

While you will not be able to hold your baby due to the complexity of the equipment, you are still their parent, and your presence is vital. Ask the nurses or Child Life Specialists how you can safely provide gentle touch. Often, parents can provide “hand hugs” (gently cupping the baby’s head and feet) or hold a tiny hand. You can always talk softly, read to them, and be an active, loving presence at their bedside.