Our little girl Esther's CDH story

Wednesday, January 11, 2012

Jason here again. Time for a little update on how things are going with the dad. Like Rhonda posted, getting the results of the amniocentesis was a major relief. It is amazing how no news can be the greatest news sometimes; Praise God!
I have been focusing on allowing God to power me, literally. Our tendency as men and women in a fallen world is to sin and disobey God. So with news like "CDH", I just want to mope around and feel sorry for myself, my wife, and our baby. What happens when we give it up to Christ is He takes over and without explanation we find ourselves somehow optimistic and joyful in an otherwise helpless situation. At times lately, I feel like I'm just going through the motions and staying busy in order to avoid feeling or contemplating what is to come. But when I'm in prayer, God just seems to be affirming me and showing me I can continue to live without the burden of "what if?".
So, there are definitely harder days and easier days, but in general, I'm really excited to see what God has in store. I believe he wants us to trust in His promises and not fear the potential outcomes. He is certainly teaching us an overall life lesson of living for the now and trusting in Him to provide for our needs. Simply said, very difficult to do, but bit by bit learning to stop relying on myself and bring all things, big or small, to Him in prayer.
We are still preparing for the worst. Attempting to plan on weeks to months at Children's Hospital, work schedule etc. I am just trying to remain excited and expectant as any "father to be" should be. Haven't told coworkers yet. Only my manager and couple others. Kinda dreading the constant "how are you's?" and "how's the baby?". So will continue to pray for guidance with that and how God wants to use it.
Anyhow, we're so thankful for everyone's prayer and support. It just gives us tangible evidence of how God is already using Esther's life to encourage us and others. Please continue, and know we are praying for all of you as well.
We have appointments coming next week. So should be updating again soon.
Praise God from whom all blessings flow!

1 comment:

AbbyJanuary 19, 2012 at 2:38 PM
Hello Holtrops! Found you from a link on BabyCenter. We are also expecting a CDH baby, little Parker due May 26, 2012. What a journey already!! I hope you do not mind if I follow along with your story as we go along... Many prayers for y'all and your sweet little girl!
-Abby Knoll from Atlanta
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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

Wednesday, January 11, 2012

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