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A congenital diaphragmatic hernia is a birth defect where the diaphragm,
the muscle that separates the chest from the abdomen,
is not formed properly.
And this allows the abdominal contents to move into the chest and
compress the lungs.
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A congenital diaphragmatic hernia is most often diagnosed by ultra sound
in the second trimester of pregnancy.
Sometimes it can be diagnosed even earlier, and at times,
not even identified during the pregnancy.
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Congenital diaphragmatic hernia is diagnosed in approximately 1 in
4,000 live births.
It is important to know that these birth defect may be found alone, or
in association with other birth defects as well.
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Standard treatment for congenital diaphragmatic hernia occurs with
surgery after birth to repair the defect in the diaphragm.
However, for the most severe cases,
it appears that prenatal treatment may also be an option.
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If congenital diaphragmatic hernia is untreated during the pregnancy,
it is critical that a baby is delivered in a center that has
extensive experience taking care of these babies post-natally.
There are specific ways that these babies are managed in the nursery
prior surgery that can help minimize many of their complications when it
comes to breathing,
feeding and figuring out if they have additional problems.
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The procedure is called fetoscopic endotrachael occlusion.
It is performed using a minimally invasive technique
by ultrasound guidance.
That means that the ultrasound is used to identify the best place
to enter the uterus.
A small camera called a fetoscope is inserted through the mother's
abdomen into the uterus.
This camera is directed into the baby's,
mouth into the trachea, and a balloon is placed in the wind pipe,
right above the separation in the two sides of the lung.
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The balloon is typically left in place for
approximately four to five weeks, depending on severity.
It is typically removed electively by a second fetoscopic procedure
at approximately 32 to 34 weeks.
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Because feto is an invasive procedure, risks for
the mother primarily include going into pre-term labor or
ruptured membranes.
There is also a small risk of bleeding or infection in the uterus.
Risks for the baby are primarily related to prematurity
in the event that the mother goes into pre-term labor.
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After the procedure, the mother is generally in the hospital for
approximately two days.
The first day is primarily dedicated to monitoring and
treating signs of pre-term labor.
Ultrasound is also performed on the first and
second day after the procedure to assess that the balloon is in place,
the size of the lungs and the overall fetal well being.
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After the mother is discharged from the hospital, the mother and
baby are followed on a weekly basis in our unit.
It is critical that the mother also remains in close proximity to
the hospital in the event that she experiences a complication and
the balloon needs to be removed in emergency.
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If the balloon is removed electively,
it is possible to have a vaginal delivery at term.
At the delivery, the neonatology team is present
to immediately receive and assess the baby.
A breathing tube is placed to allow the baby to breathe and
a small tube is placed into the baby's stomach to help prevent
any contents from the stomach getting into the lungs.
Immediately after delivery, the baby is transported to the neo natal
intensive care unit where further evaluation and
assessment by the pediatric surgical teams occurs.
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After the delivery, the baby is managed in the neonatal intensive
care unit along our dedicated management care path for
babies with congenital diaphragmatic hernia.
This involves monitoring how the babies respiratory status, blood
pressure and if the baby requires additional treatment such as ECMO.
All of these things combined help to determine when the surgery is
performed in order to repair the congenital diaphragmatic hernia.
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The reason to choose Johns Hopkins for treatment for a baby for
congenital diaphragmatic hernia, is that all services
that are required from diagnosis, prenatal care,
prenatal treatment, delivery management, and postnatal care.
Including all necessary pediatric specialties and
surgical services are available under one roof.
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Neonatal outcomes for babies with congenital diaphragmatic hernia
treated at Johns Hopkins Hospital are above national averages for
both inborn and out-born babies with CDH.
Additionally, the ECMO program here at Johns Hopkins is one
of the longest and most experience with caring for
babies with congenital diaphragmatic hernia.
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