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CDH FAQ

What is CDH?
 
CDH stands for Congenital Diaphragmatic Hernia.  It means there is a hole in his diaphragm (in Isaac's case, it is on his left side) that allows organs to go up into the chest cavity.  This can be fixed surgically when he is born.  The problem is that the other organs (like his stomach, intestines, and part of his liver) are not allowing his lungs to grow as they should.  CDH is just as common as spina bifida, cystic fibrosis, and congenital muscular dystrophy.  The overall survival rate for CDH is 50%.  You can find out more at these sites:

http://fetus.ucsfmedicalcenter.org/cdh/learn_more.asp

http://breathofhopeinc.com/

http://www.cherubs-cdh.org/

What is lung to head ratio (LHR)?
 
Lung to head ratio is a measurement that doctors use to see how much lung is present.  Generally below 1 is a worse outcome, above 1 is a better outcome and above 1.4 is doing very well.  Isaac's LHR from the MRI at 22 weeks as 1.14.  Not terrible, but not great.  LHR is highly debated because it can differ greatly based on who is doing the measurement and when it is done.  Some studies show no correlation between LHR and survival. 

Why is the liver position so important?
 
The stomach and intestines are relatively squishy but the liver is hard.  The more liver that is up in the chest cavity, the less lung that can develop.  Most CDH babies have some liver up.  Less than 20% is a better chance for survival.  They measured Isaac's liver up at 16% at the MRI. 

What other complications are there?
 
Babies with CDH have a higher chance of other chromosomal problems including trisomies like Down Syndrome.  They also have a higher chance at having heart problems.  Isaac had a full micro-array done and has no genetic problems except a small micro-deletion on the 8th chromosome.  This deletion is linked to CDH and heart defects.  So far, Isaac's heart looks great.

What studies are being done?
 
There are a lot of ongoing studies right now and many of them seem to contradict each other.  However, we need more research to help these babies.  You can find out more here:  http://www.cherubs-cdh.org/research/index.php

Where will he be delivered?

Isaac will be delivered at Medical City of Dallas. It is really important to deliver a CDH baby at a hospital with a level 3 NICU, ECMO, and specialists ready to take care of a baby with this condition. Some parents don't know their baby has CDH until he or she is born and often have to transport the baby to a hospital capable of taking care of him. Babies with CDH are very fragile and travel can decrease their chances.

What is his due date?

June 27th

What will happen when Isaac is born?

When Isaac is born, they will immediately put him on a ventilator to make sure he can breathe.  They don't want him to go without oxygen ever.  They will let him stabilize and when he is ready, they will do the surgery to fix the hernia.  Sometimes they need to use a patch to cover the hole in the diaphragm.  We are hoping Isaac doesn't need one because those patches tend to break as the child grows.  Babies with CDH can spend anywhere from 3 weeks to 6 months in the NICU.  Usually they need a feeding tube for a while until they are able to breathe well and eat well.  Typically they have GERD (reflux) and need medicine to help. 

  What is ECMO?

Extracorporeal Membrane Oxygenation.  This is a last resort measure when the baby is having too much trouble breathing and the heart gets tired.  It is a baby heart and lung bypass machine that allows the lungs and heart to rest.  It can save a baby's life but it can also causes a lot of side effects and problems.  We're praying he won't need the ECMO, but they never know.  Some babies with high LHR need the ECMO and others with much smaller lungs don't need it.  It all depends on the severity of the baby's pulminary hypertension.

What is pulmonary hypertension?

This is a CDH baby's number one enemy.  I don't quite understand it so I'll quote from another website: 

"Pulmonary hypertension is an increased pressure in the arteries supplying blood to the lungs. This increased pressure shunts blood away from the lungs and decreases the supply of oxygen to the body. This shunting of blood away from the lungs is normal blood flow while the baby is inside the uterus because the baby is not breathing on his/her own. However, once a baby is born these arteries in the lungs need to relax so that blood can flow through the lungs and exchange gases. These gases are exchanged when the blood rids itself of carbon dioxide and pick up oxygen to supply the body. Pulmonary hypertension is a life-threatening complication. If the oxygen levels are low we can attempt some more aggressive treatment options, including nitric oxide therapy and a heart bypass machine.http://www.chw.org/display/PPF/DocID/34373/Nav/1/router.asp
 
Is this related to losing Angie?

No, Angie had anencephaly, a fatal neural tube defect.  It is not related to CDH.  Isaac does not have an open neural tube defect and Angie did not have CDH.

What can I do to help?

Pray:
- that his lungs continue to grow
- that the liver does not come up any more
- that I make it to term (premature babies with CDH have a much lower survival rate)
- that his heart continues to show no problems
- that we stay positive and have faith
- for the doctors and nurses who will repair the hernia and help him grow

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