Our little girl Esther's CDH story: Hallelujah

Monday, April 23, 2012

Hallelujah

Hallelujah, smooth circuit change! Keep the prayer coming cause our God is worthy of all praise. Thank you all for glorifying Him through prayer tonight and everyday.
Almost started chewing my own teeth, but finally heard the word and Esther looks nice and comfy. God bless and goodnight.

4 comments:

MisMisWilsonApril 24, 2012 at 7:00 AM
Praying for your family and you.

M Wilson
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UnknownApril 24, 2012 at 9:40 AM
I am so happy to hear the good news! I believe God has great things planned for your daughter, and for the two of you. <3
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annetteApril 24, 2012 at 10:19 AM
Continuing to pray with out ceasing. Remember to breath and know that He is in control. Esther is a miracle and I am counting the days til we can see her sweet face at GNF!
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MayaApril 24, 2012 at 11:10 AM
I don't know you but my cousin shared this link on her Facebook. I have been praying for your family and wish you all the best. Your faithfulness to Christ is amazing and I know He will bless you for it.
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What is Congenital Diaphragmatic Hernia (CDH)?

A congenital diaphragmatic hernia (commonly known as CDH) is an opening in the diaphragm (The dome-shaped muscle that separates the chest cavity from the abdomen.) It occurs at approximately 9 weeks gestation, when the diaphragm, for an unknown reason, fails to close completely. The hole allows the abdominal organs to push into the chest cavity. CDH is a life-threatening birth defect because it limits the growth of the lungs.

CDH occurs in every 1-2500 live births in the United States. Approximately 1,800 babies are born each year with CDH. Approximately 50% of all babies born with CDH die. Luckily in Seattle where were told we have a 80-85% chance they will survive. CDH happens just as often as Spina Bifida and Cystic Fibrosis yet many have never heard of CDH. To explain it a little further:

The diaphragm is a muscle that separates the abdominal cavity from the chest. It’s a divider. At 8-12 weeks gestation, depending on what you read, this muscle develops and comes together, as it should. But sometimes it doesn’t. Nobody knows why, it is random. There isn’t enough evidence to suggest that it is genetically destined to happen, and it isn’t because of anything the mother or father did or didn’t do. The diaphragm simply forgets to close. In 90% of diaphragmatic hernia cases, this happens on the left side. It’s also more common in girls.

This happens at the same time that everything inside of the fetus is forming and finding their places, and if there’s a hole, sometimes organs will find their way through it. Sometimes the organ involvement is minimal, sometimes not. In any case, if there is anything that is supposed to be in the abdominal cavity but is incorrectly located in the chest cavity, it takes up valuable space that the lungs need in order to fully develop.

When a baby with known CDH is born, she has to be intubated and placed on a ventilator immediately. Crying can make the hernia worse. If all techniques of getting her adequate oxygen that way are exhausted, she’ll be placed on ECMO, which is a whole different monster. Once a baby with CDH is placed on ECMO, his chance of survival drops to 50%. ECMO comes with its own set of complications (and ECMO is a complication in and of itself), so we’ll focus on that if things get to that point.

The thing about hernias is that they don’t repair themselves. They either get fixed or get worse. Surgery is necessary to repair the hernia: Making an incision below his ribs, moving his organs into place, and connecting the tissue of the hernia (or repairing with a patch if there is not enough tissue to connect). The surgery itself is pretty straightforward, but the issue lies in his ability to maintain adequate oxygen levels.

Even if you move the organs back into place, even if the hernia is repaired perfectly…the lungs still missed out on valuable development while in the womb. The months following surgery are dedicated to recovery from surgery as well as ensuring proper oxygen levels. The average NICU stay after birth is 2-3 months. Babies with CDH may come home with forms of oxygen assistance if everything else is stable enough.

Our little girl Esther's CDH story

Rhonda and Jason

Monday, April 23, 2012

Hallelujah

4 comments:

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