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

Featured Volunteer: Josh Hensley

Josh Hensley is the father of two CDH babies, both of whom grew their wings.  It is hard to put into words how important this person is to the charity. Back in October 2010, this individual sent CHERUBS an email interested in being a volunteer with CHERUBS. Having lost two children to CDH, this member wrote in this email that he felt immense responsibility to “wage war” on CDH. His wife and he wanted to set up a CDH awareness tree at the festival of trees for Primary Children’s Hospital that year and wanted CHERUBS to be a part of it. From there, the rest is history. Josh Hensley is currently the Research Director at CDHi and has held many volunteer positions at CHERUBS since late 2010. He has traveled the world raising awareness and continues to wage war against CDH and we know he will not quit until that war is won. He has been a voice of reason throughout the years, for we don’t get much Dad point of views on our volunteer team. He is a one of kind man, has a big heart and is out there in the trenches fighting to put an end to CDH. Josh and his wife Melanie are the proud parents of 4 girls. Today, we thank Josh for all he does for CDH International and CHERUBS, his passion in wanting to wage war on CDH and his desire to help all families that are affected by CDH.

Read more...

Featured Cherub: Phoebe Kleensang

Featured cherub of the week is 5 year old Phoebe Kleensang.  Phoebe is the daughter of Megan and Aaron Kleensang.  Cherub Phoebe is a fighter and such an inspiration to many!

This is Phoebe’s story, written by her mom Megan:

Read more...

New Product in Online Store: CDHi’s “Merry Christmas Around the World” Ornament

Spread CDH Awareness with holiday cheer with one of our official CDHi Christmas ornaments! These ceramic ornaments attach securely to the tree to ensure that they’re both cat and child-proof.

.: One-sided printing
.: Golden string included for hanging
.: White ceramic

 

 
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2017 - News from CHERUBS

Featured Volunteer: Josh Hensley

Josh Hensley is the father of two CDH babies, both of whom grew their wings.  It is hard to put into words how important this person is to the charity. Back in October 2010, this individual sent CHERUBS an email interested in being a volunteer with CHERUBS. Having lost two children to CDH, this member wrote in this email that he felt immense responsibility to “wage war” on CDH. His wife and he wanted to set up a CDH awareness tree at the festival of trees for Primary Children’s Hospital that year and wanted CHERUBS to be a part of it. From there, the rest is history. Josh Hensley is currently the Research Director at CDHi and has held many volunteer positions at CHERUBS since late 2010. He has traveled the world raising awareness and continues to wage war against CDH and we know he will not quit until that war is won. He has been a voice of reason throughout the years, for we don’t get much Dad point of views on our volunteer team. He is a one of kind man, has a big heart and is out there in the trenches fighting to put an end to CDH. Josh and his wife Melanie are the proud parents of 4 girls. Today, we thank Josh for all he does for CDH International and CHERUBS, his passion in wanting to wage war on CDH and his desire to help all families that are affected by CDH.

Read more...

Featured Cherub: Phoebe Kleensang

Featured cherub of the week is 5 year old Phoebe Kleensang.  Phoebe is the daughter of Megan and Aaron Kleensang.  Cherub Phoebe is a fighter and such an inspiration to many!

This is Phoebe’s story, written by her mom Megan:

Read more...

New Product in Online Store: CDHi’s “Merry Christmas Around the World” Ornament

Spread CDH Awareness with holiday cheer with one of our official CDHi Christmas ornaments! These ceramic ornaments attach securely to the tree to ensure that they’re both cat and child-proof.

.: One-sided printing
.: Golden string included for hanging
.: White ceramic