CDH Treatments & Procedures

   There are many different types of treatments and procedures that can be used to help babies born with CDH. Below are some descriptions of these procedures, written by hospitals. CHERUBS does not refer members to specific hospitals, nor do we recommend specific treatments. The information provided is for educational purposes only so that you can learn about different options and make the best decision you can for your cherub.

   If you are interested any of these treatment options, please speak with your child's doctor or your obstetrician. Each hospital has their own criteria of acceptance for CDH patients. You baby may or may not be a candidate for these options based on his / her medical information and age.

   This is an ever-changing list as hospitals start new services and end research trials. If you have an update or an addition, please This email address is being protected from spambots. You need JavaScript enabled to view it. .

Treatments & Procedures

 

In Utero Treatments & Procedures

FETENDO Fetal Surgery
Minimally invasive fetoscopic surgery, most often used to perform a Tracheal Occlusion. Offered by the following hospitals:

University of California San Francisco Fetal Treatment Center
Yale Maternal Fetal Medicine
The Fetal Care Center of Cincinnati


Tracheal Occlusion
A procedure during which a plug (or gel) is placed into the baby's trachea while he/she is still in utero. The pressure forces the lungs to expand. Those who use a plug must have a second surgery before birth to remove the plug from the trachea. Offered by the following hospitals:

University of California San Francisco Fetal Treatment Center
St. Louis Fetal Care Institute
Hasbro Children's Hospital


Perflubron Induced Lung Growth
Filling the lungs with Perflubron (a special liquid) and placing this liquid under constant pressure to stimulate the lungs to grow.

University of Michigan Fetal Diagnosis & Treatment Center
St. Louis Fetal Care Institute


Open Fetal Surgery 
This is the very evasive repair of the baby's diaphragm while still in utero. Hospitals no longer perform this surgery.


Betamethosone Steroids
Steroid treatments that encourage lung growth. Given to mothers while pregnant, these steroids are commonly given to those who are expected to go into preterm labor and deliver babies with small lungs. Most high-risk Obstetricians offer these steroids but not all doctors prescribe them for CDH.

 

Neonatal Treatments & Procedures

 

EXIT to ECMO Procedure
Ex Utero Intrapartum Treatment (EXIT) involves attaching the baby to ECMO before he / she is able to take their first breath and before the umbilical cord is cut. Offered by the following hospitals:

University of California San Francisco Fetal Treatment Center
Children's Hospital of Boston Advanced Fetal Care Center
The Children's Hospital of Philadelphia Center For Fetal Diagnosis and Treatment
The Fetal Care Center of Cincinnati
St. Louis Fetal Care Institute


ECMO
Extracorporeal Membrane Oxygenation, a heart and lung bypass machine that allows a baby's cardio and pulmonary systems to rest. 50% of CDH babies require ECMO.  Click here to view a list of ECMO Centers.


Nitric Oxide
A powerful inhaled gas, to help dilate the blood vessels in the lungs and provide short-term improvement and stabilization in a critically ill baby who is requiring escalating support


Gentle Ventilation
Less aggressive ventilation technique.

University of Florida at Gainesville (SHANDS)
Texas Children's Fetal Center


Standard Ventilation
The most common of ventilator breathing assistance for these babies. Most hospitals equipped with a PICU or NICU offer this treatment.


High Frequency Ventilation
Also knows as the "Jet" or "Oscillator", this ventilator gives the baby rapid, shallow breaths. This is often a step between ECMO and Standard Ventilation. Most hospitals equipped with a PICU or NICU offer this treatment.


CDH Repair
There are several different ways that a pediatric surgeon can repair Congenital Diaphragmatic Hernia, dependent upon size of the hole, location and type of materials available. Many hospitals around the country have experienced pediatric surgeons who work with CDH patients - an experienced surgeon sees a minimum of 3 cases per year. However, not all hospitals are equipped with ECMO.


Nissen Fundoplication
A large percentage of CDH survivors are diagnosed with gastrointestinal reflux, which greatly impedes eating and weight gain. Often, if the baby does not respond to medications, surgery is performed to prevent the child from recurrent vomiting. Most pediatric surgeons are able to perform this surgery.


CDH Clinics
These are centers with centered care for children affected by Congenital Diaphragmatic Hernia:

Children's Hospital of Boston
University of California San Francisco Fetal Treatment Center
The Children's Hospital of Philadelphia Center For Fetal Diagnosis and Treatment
University of Florida at Gainesville (SHANDS)

News from CHERUBS

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Featured Cherub of the Week is Sofia Marie Carman, she is the daughter of Steve and Katie Carman. 

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CHERUBS Annual Blue Jays Get Together, April 27, 2019

Save the date!  The annual Blue Jays Get Together is scheduled for April 27, 2019. Canada International Representative, Amanda Plakholm, is in the process of organizing a CHERUBS Get Together for families at the Toronto Blue Jays game on Saturday, April 27, 2019. The game is at 3:07pm against the Oakland A's. This is the 5th annual Cherubs Blue Jays Game gathering, where CDH families and friends can come together to raise CDH Awareness. To reach Amanda please email This email address is being protected from spambots. You need JavaScript enabled to view it. .

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Featured Cherub: Steven Hilario Lagunas

Featured cherub of the week is Steven Hilario Lagunas. He is the son of Berenice and Steven Lagunas. He fought so hard for 6 months, a warrior in every sense of the word.  From Steven's GoFundMe page, "Steven was a beautiful boy with a personality that shines brighter than the sun. His smile and his long eyelashes stole everyone’s heart. He smiled regardless of what he was going through. He truly is the strongest little boy we knew. Although our time with him was cut short he will be incredibly missed and loved forever. The time spent with him will forever be cherished."

The following is shared by cherub Steven's mom:

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2017 - News from CHERUBS

Featured Cherub: Sofia Marie Carman

Featured Cherub of the Week is Sofia Marie Carman, she is the daughter of Steve and Katie Carman. 

Read more...

CHERUBS Annual Blue Jays Get Together, April 27, 2019

Save the date!  The annual Blue Jays Get Together is scheduled for April 27, 2019. Canada International Representative, Amanda Plakholm, is in the process of organizing a CHERUBS Get Together for families at the Toronto Blue Jays game on Saturday, April 27, 2019. The game is at 3:07pm against the Oakland A's. This is the 5th annual Cherubs Blue Jays Game gathering, where CDH families and friends can come together to raise CDH Awareness. To reach Amanda please email This email address is being protected from spambots. You need JavaScript enabled to view it. .

Read more...

Featured Cherub: Steven Hilario Lagunas

Featured cherub of the week is Steven Hilario Lagunas. He is the son of Berenice and Steven Lagunas. He fought so hard for 6 months, a warrior in every sense of the word.  From Steven's GoFundMe page, "Steven was a beautiful boy with a personality that shines brighter than the sun. His smile and his long eyelashes stole everyone’s heart. He smiled regardless of what he was going through. He truly is the strongest little boy we knew. Although our time with him was cut short he will be incredibly missed and loved forever. The time spent with him will forever be cherished."

The following is shared by cherub Steven's mom:

Read more...