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

CDH Picnic in Peoria, IL, held on 9.16.18

On Sunday, September 16th, CDH International Medical Advisory Board Member, Kristin Aigner, held a CDH family picnic for families in Peoria, IL.  Food and drinks were provided as they celebrated our miracles, whether they are here with us, or watching over us from heaven. 

Read more...

Featured Cherub: Taylor Jarecki Steffensmeier

Featured cherub of the week is Taylor Jarecki Steffensmeier.  This young woman continues to beat the odds one breath at a time and continues to bring hope to so many CDH families.  She continues to raise CDH Awareness and is an inspiration to so many of our members.  Here is Taylor’s story in her own words: 

I was born with undiagnosed LCDH in 1991 in a small rural hospital. The doctors noticed something was wrong with me right from the start as I entered the world blue. It was too foggy to be life flighted to the nearest NICU which was two hours away so I was taken by ground. Not even 24 hours old my parents had to make the decision to put me on ECMO. At 5 days old I had my first hernia repair surgery while I was still on ECMO. My hole was about quarter size, which doesn’t sound big in an adult but I was a five pound baby with that size of hole. They used a mesh patch. I was able to come off ECMO shortly after my repair.  One month later I broke out of the NICU and got to go home! 

Read more...

3rd Annual Get Your Shine On Golf Tournament Fundraiser

The 3rd Annual “Get Your Shine On” Golf Tournament was held at The Pointe Golf and Event Center in Elk Point, SD on September 8, 2018.  The tournament is held in honor of Rae Ann Davis, daughter of Sydney and Garrett Davis of Burbank, SD.  Rae Ann lost her fight to CDH shortly after she was born due to a large lack of development of her diaphragm along with limited lung development. 

Get Your Shine On was created to honor her memory and serve as a time for fellowship, support and a chance to raise funds to aid in the research of CDH and to support families that have been affected.  This event has continued to grow over the years and has raised over $34,500 in total, including the $14,500 plus from this year alone. Last year a silent auction was added to the event, which is conducted live at the golf event and posted onto Facebook for those unable to attend.  They had 64 golfers take in the day out on the course and numerous supporters who enjoyed the day from the clubhouse patio. 

Read more...

 
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2017 - News from CHERUBS

CDH Picnic in Peoria, IL, held on 9.16.18

On Sunday, September 16th, CDH International Medical Advisory Board Member, Kristin Aigner, held a CDH family picnic for families in Peoria, IL.  Food and drinks were provided as they celebrated our miracles, whether they are here with us, or watching over us from heaven. 

Read more...

Featured Cherub: Taylor Jarecki Steffensmeier

Featured cherub of the week is Taylor Jarecki Steffensmeier.  This young woman continues to beat the odds one breath at a time and continues to bring hope to so many CDH families.  She continues to raise CDH Awareness and is an inspiration to so many of our members.  Here is Taylor’s story in her own words: 

I was born with undiagnosed LCDH in 1991 in a small rural hospital. The doctors noticed something was wrong with me right from the start as I entered the world blue. It was too foggy to be life flighted to the nearest NICU which was two hours away so I was taken by ground. Not even 24 hours old my parents had to make the decision to put me on ECMO. At 5 days old I had my first hernia repair surgery while I was still on ECMO. My hole was about quarter size, which doesn’t sound big in an adult but I was a five pound baby with that size of hole. They used a mesh patch. I was able to come off ECMO shortly after my repair.  One month later I broke out of the NICU and got to go home! 

Read more...

3rd Annual Get Your Shine On Golf Tournament Fundraiser

The 3rd Annual “Get Your Shine On” Golf Tournament was held at The Pointe Golf and Event Center in Elk Point, SD on September 8, 2018.  The tournament is held in honor of Rae Ann Davis, daughter of Sydney and Garrett Davis of Burbank, SD.  Rae Ann lost her fight to CDH shortly after she was born due to a large lack of development of her diaphragm along with limited lung development. 

Get Your Shine On was created to honor her memory and serve as a time for fellowship, support and a chance to raise funds to aid in the research of CDH and to support families that have been affected.  This event has continued to grow over the years and has raised over $34,500 in total, including the $14,500 plus from this year alone. Last year a silent auction was added to the event, which is conducted live at the golf event and posted onto Facebook for those unable to attend.  They had 64 golfers take in the day out on the course and numerous supporters who enjoyed the day from the clubhouse patio. 

Read more...