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

2018 Light Ups for CDH Awareness Day

Buildings and Landmarks in the United States and Canada lit up blue, pink and yellow on April 19th for CDH Awareness Day.  The CN Tower will light up on April 28th in Toronto, Canada.

The following locations lit up for CDH Awareness Day in 2018:

Read more...

CDH International Telethon on April 19th

On CDH Awareness Day, April 19th, CDH International interviewed families, researchers, doctors and volunteers as they all shared stories, tears and trials as we raised awareness and money for Congenital Diaphragmatic Hernia via live video on Facebook.  We had guests live from around the globe, truly an international day of CDH Awarneess.  The goal was to reach $50,000 over 15 hours during a live Facebook telethon.  Donors were able to make a donation by calling in, donating on any of the member's Facebook telethon fundraisers or directly on the website.  As the telethon closed, CDH International surpassed the goal bringing in $51,388.  This number is on the rise, where the final total will be announced on April 30th.  Facebook fundraisers for the telethon are still ongoing and the charity waits for any checks arriving by mail.

Read more...

2018 Salt Lake City Bees Game for CHERUBS

On Saturday, April 21, 2018, at Smith's Ballpark in Salt Lake City, Utah, CHERUBS held a CDH Awareness Ballgame. This was the 5th annual CDH Awareness ball game for the charity.  The game has been a yearly celebration of CDH Awareness Month. CHERUBS members, family and friends got together for a great night of baseball, meeting other CDH families and raised a ton of CDH Awareness. Abby Rush, 15 year old CDH survivor, got to throw in the 1st pitch of the night and kick off the celebration for the charity.  Wearing her wings, Abby threw the 1st pitch like a pro and raised a ton of CDH Awareness.

Read more...

 
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2017 - News from CHERUBS

2018 Light Ups for CDH Awareness Day

Buildings and Landmarks in the United States and Canada lit up blue, pink and yellow on April 19th for CDH Awareness Day.  The CN Tower will light up on April 28th in Toronto, Canada.

The following locations lit up for CDH Awareness Day in 2018:

Read more...

CDH International Telethon on April 19th

On CDH Awareness Day, April 19th, CDH International interviewed families, researchers, doctors and volunteers as they all shared stories, tears and trials as we raised awareness and money for Congenital Diaphragmatic Hernia via live video on Facebook.  We had guests live from around the globe, truly an international day of CDH Awarneess.  The goal was to reach $50,000 over 15 hours during a live Facebook telethon.  Donors were able to make a donation by calling in, donating on any of the member's Facebook telethon fundraisers or directly on the website.  As the telethon closed, CDH International surpassed the goal bringing in $51,388.  This number is on the rise, where the final total will be announced on April 30th.  Facebook fundraisers for the telethon are still ongoing and the charity waits for any checks arriving by mail.

Read more...

2018 Salt Lake City Bees Game for CHERUBS

On Saturday, April 21, 2018, at Smith's Ballpark in Salt Lake City, Utah, CHERUBS held a CDH Awareness Ballgame. This was the 5th annual CDH Awareness ball game for the charity.  The game has been a yearly celebration of CDH Awareness Month. CHERUBS members, family and friends got together for a great night of baseball, meeting other CDH families and raised a ton of CDH Awareness. Abby Rush, 15 year old CDH survivor, got to throw in the 1st pitch of the night and kick off the celebration for the charity.  Wearing her wings, Abby threw the 1st pitch like a pro and raised a ton of CDH Awareness.

Read more...