This is very broad because each and pregnancy is different and all infants with CDH are unique.

Congenital Diaphragmatic Hernia is diagnosed in pregnancy through ultrasound. Ultrasound technology has advanced over the last twenty years to detect more birth defects and other issues in pregnancy and also give a better estimated due date. Ultrasound does not always see everything. One is viewing a fetus through multiple layers to view their organs, bones and hearts. There are many families who were told after having an ultrasound they were having a baby of one sex and were surprised by another being born. However, diagnoses of congenital diaphragmatic hernia through ultrasound is usually very accurate.

If you are pregnant with a CDH baby, your doctor will probably have more frequent ultrasounds to assess the organ placement through the pregnancy.

Upon diagnoses, you will probably be asked to have an amniocentesis, to rule out any other issues that may exist.

You will probably be scheduled for an Ultrafast MRI to get a more accurate view of the heart and lungs. Since the organs herniated to the thorax, they crush and move the heart while in development which may cause the development of the heart to be compromised. This is not always the case. There are many infants born with CDH who have normal hearts.

Lung Head Ratio (LHR) is a measurement of the lung or Pulmonary Hypoplasia and in the past was used to predict the survival rates of CDH infants. It was once stated that a measurement of 1.0 or above was considered survivable but through various studies they have found the LHR is not an accurate way to predict the outcome. Many times different Medical Centers and different doctors who perform this testing will come up with different results. Also, the results of the test can differ from one week to the next.

Some pregnancies with congenital diaphragmatic hernia have Polyhydramnios, this is increased amniotic fluid due to the fetus not ingesting it as they should. This also can occur in pregnancies where other issues may also exist with the unborn baby.

Along with these tests, you also may have more frequent Non Stress Tests, where they monitor the infant’s heart rate. These tests and procedures would be in addition to the normal tests they schedule through pregnancy such as the Glucose Test.

Many mothers ask if they will have to have a caesarian when they give birth to these infants. Ideally, the best way to have these infants is through vaginal delivery. When a baby is born this way, the fluid in the lungs is expelled as they are born. Occasionally, caesarian babies have “wet lung” because they didn’t have the benefit of having the fluid expelled during delivery.

Once these babies are born the Neonatal Team will take over and incubate them immediately, in most cases. Expect this. This is also to help your baby breathe. Do not expect to hold your baby after birth as you would if they didn’t have CDH. The Neonatal Team must take over and stabilize your child which is key in to get them to surgery and to recovery. Surgery may take place a few days after birth to several weeks. This is depends upon how your infant’s case and each is different.

One of the best ways to document your pregnancy and your child’s progress and life is blogging or having a webpage.  CaringBridge offers secure sites where others may access only if they know your page information.

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