CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
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CDH
CDH Research
CHERUBS
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CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
Treatments for Congenital Diaphragmatic Hernia
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 e-mail us.
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 diaphram 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 Obstretricians 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
MGill Foetal Diagnosis and Treatement Group
ECMO
- Extracorporael 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)
This is an ever-changing list as hospitals start new services and end
research trials. If you have an update or an addition, please e-mail us.
The data on this page is for informational purposes only.
The map below shows the location of the above centers. Many hospitals have more than one service.
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