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Postnatal Treatment of Congenital Diaphragmatic Hernia

What will happen after delivery?

Babies born with CDH are at high-risk for respiratory distress. Immediately following delivery, doctors will carefully evaluate the baby. A neonatologist (a specialized doctor for high-risk babies) will begin providing breathing support and other necessary care. Depending on the severity of breathing difficulties, the baby may require a breathing tube. The newborn will be transferred to the neonatal intensive care unit for further evaluation and management.

Most infants will be stable after birth and will be closely monitored. Although breathing difficulties may require mechanical ventilation, the newborn may not require additional support and can be stabilized until surgery.  A small group of infants with CDH may continue to develop problems with breathing and problems maintaining heart function and blood pressure. Your baby's doctors will provide many different methods to improve the condition of your baby. In the most severe cases, your newborn may need to be supported by using ECMO, a heart-lung bypass machine.

Surgical repair of the CDH is not an emergency. In most cases, the pediatric surgeons will wait until the infant is stable and able to handle the stresses of surgery. The pediatric surgeon will evaluate the baby for surgery, and once he or she has been stabilized for a period of time, surgery will be performed to repair the CDH. In some cases, the baby will stabilize quickly enough to undergo surgery in a few days after delivery. In more severe cases, it may be longer before it is safe to perform the surgical repair. The surgeon will determine the safest time for the surgical repair. Typical hospital stays for a newborn with CDH range from a few weeks to several months.

What type of surgery is performed and when?

Surgery to close the hole in the diaphragm is usually performed within two days to two weeks after birth. The procedure takes about two hours. In many babies with small defects, pediatric surgeons can perform a minimally invasive repair through three or four incisions of less than 1 centimeter each near the armpit.

What is ECMO?

ECMO (extracorporeal membrane oxygenation) provides cardiac and respiratory support to patients whose heart and lungs are unable to provide an adequate amount of gas exchange to sustain life. The ECMO machine functions like the heart-lung bypass machine used in open-heart surgery, allowing time for the heart and lungs to rest and recover. An artificial lung (membrane) located outside the body (extracorporeal) is used to move oxygen into the blood, which carries it to body tissues (oxygenation).

Children's Memorial Hermann Hospital was the first hospital in Houston to offer an organized program for pediatric extracorporeal membrane oxygenation (ECMO), a treatment used for newborns and children who are critically ill with respiratory failure. The program, initiated in the early 1990’s, was also the first in the Greater Houston area to be named a Designated Center of Excellence by the Extracorporeal Life Support Organization (ELSO), which has recognized the program continually since the inception of the award. The ELSO award recognizes ECMO programs worldwide that distinguish themselves by having processes, procedures, and systems in place that promote excellence and exceptional care in extracorporeal membrane oxygenation.
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Do all children require ECMO?

About one-third of children born with CDH require ECMO.

What are the expected long-term complications of CDH?

Those who received fetal intervention, those who have received ECMO, and/or those with a patch repair are at highest risk and require specialized long-term follow-up by a multidisciplinary team of medical, surgical and developmental specialists to identify and treat problems before they result in disability. The more common complications include underdevelopment of the lung tissue, which can cause difficulty breathing; poor weight gain and growth; gastrointestinal challenges; pulmonary issues; recurrent diaphragmatic hernias; neurodevelopmental delays; hearing loss; and cardiac problems.  Attention deficit hyperactivity disorder (ADHD) is emerging as a very common diagnosis among children with CDH.

Based on international data, as many as 30 percent of children born with diaphragmatic hernia do not survive. The risk of death is related to the size of the diaphragmatic defect, associated anomalies, and the lung development. Many parents make the decision to donate tissue for research as a way to help future children with CDH.

How is the severity of CDH determined? What are the varying degrees?

Children born with congenital diaphragmatic hernia range from those who appear normal at birth to those who are so sick they immediately need extracorporeal membrane oxygenation (ECMO) to support heart and lung function. Although other factors are involved in this complicated disease, much of the severity of CDH is related to the size of the hole in the diaphragm. This can only be determined during the operative repair of your child’s diaphragm. In general, the larger the hole, the more care your child will need.

Doctors classify congenital diaphragmatic hernia according to the size of the defect – A, B, C or D. A very small hole is classified as A; a classification of D means your child was born with a very large hole in the diaphragm.
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How long can I expect my child to be in the hospital after birth?

Babies with CDH go to the Neonatal Intensive Care Unit (NICU) where they are stabilized, a process that usually takes between 48 hours and two weeks. Based on international data the total length of your child’s hospital stay depends on the size and severity of the diaphragmatic hernia: A, B, C or D, these include:

  • Babies classified in severity as A are in the hospital an average of three weeks
  • Babies classified as B can expect a four-week stay
  • Babies classified as C stay an average of eight weeks
  • Babies classified as D are in the NICU about 12 weeks

Please note these are only averages and can vary widely, depending on the individual patient.

Within that time period, children with more severe CDH may need to be supported on ECMO. After being taken off ECMO, they may be on a mechanical ventilator for a period of time, depending on the severity the diaphragmatic hernia. Ultimately, most babies are able to breathe without a breathing machine. After their hospital stay, babies go home and transition to the High-risk Multidisciplinary Clinic for CDH for comprehensive care of their needs.

How long after the NICU stay will my baby be seen in the specialty clinic?

Usually doctors see babies in the clinic two to four weeks after their NICU stay.