Our little girl Esther's CDH story: at a loss for words

Wednesday, April 18, 2012

at a loss for words

Sorry I didn't get out an earlier update today. I have been at a loss for words.
The town I grew up in, although no longer this way, was once small in terms of how tightly knit the community was. With few elementary schools, 3 middle schools and two high schools, I knew or had heard of just about everyone in town my age or my older brothers' ages.
My brothers' friends, although not necessarily my "friends", looked after me like other older brothers. Sometimes this meant I got the "treatment" from an extended family, but mostly this meant I was cared for and protected by what seemed like an entire town.
Like me, my brothers had friends they always hung out with. Friends they could count on. Friends they trusted. Friends that would do anything for them and they would do anything for.
One of those friends died yesterday. Joe Chorvat was to me, what my older brothers are and were. A big brother and a "man's man".
I last saw him at another friend's wedding, and it was great to see the "old gang" of boys laughing and retelling stories.
I am at a loss for words because it doesn't make any sense. Because I feel selfish and self absorbed. The world continues outside of mine, and it is not so pretty. I would ask that those that have been praying for Esther, Rhonda, and I would include the Chorvat family. Ask for grace in the midst of sorrow and grief. We cannot even comprehend what they are going through, and can only offer our love and prayer.

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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

Wednesday, April 18, 2012

at a loss for words

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