Our little girl Esther's CDH story

Friday, April 13, 2012

Our baby girl is fighting on ECMO. It is a heart and lung bypass machine that does the work for her heart and lungs outside of her body (best way to explain it). This is keeping her alive but giving her rest. Pray for no more bleeding on brain at this point plus lots of other things. Jason will update if we get a chance on our blog. I have not slept yet as my mind wont shut down. Prayers for this tonight. WE Love you all and feel God's presence everywhere!!! We promise to write more when we have strength and energy and sleep. Its been up and down saving here life many times. You can't imagine what it feels like to be trying to get something to eat for breakfast after being up all night and getting paged to come now. Running down childrens hallways to see over 30 doctors working on your girl. WE screamed and cried out prayers. He heard us and kept her alive. These next 2 weeks will be touch and go of a roller coaster. Don't stop praying.
Rhonda

4 comments:

AnonymousApril 13, 2012 at 9:36 PM
I won't stop praying! Isaiah 43: "But now, this is what the Lord says - he who created you, [Rhonda, Jason & Esther], he who formed you O Israel: 'Fear not, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze...you are precious and honored in my sight, and I love you...do not be afraid, for I am with you...You are my witnesses, declares the Lord, and my servant whom I have chosen, so that you may know and believe me and understand that I am he...This is what the Lord says - he who made a way through the sea, a path through the mighty waters...'forget the former things; do not dwell on the past. See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the desert and streams in the wasteland." The Lord bless you, keep you, make his face to shine upon you, be gracious unto you, lift up the light of his countenance upon you and give you his peace.
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AnonymousApril 13, 2012 at 9:40 PM
You don't know me, but I've cried for you and your little Esther today.
Tonight, I hugged my own little baby girl a little tighter.
You are in my prayers. God speed.
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UnknownApril 14, 2012 at 7:15 AM
Praying for you all. Much love and prayers going your way, for the birth of your beautiful daughter and the fight she has ahead.
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AnonymousApril 14, 2012 at 9:36 AM
Praying and crying out to God for you and your family right now. Our son Niklas was born with CDH July 2010. Thru God's grace & strength we survived his CDH. He is now a thriving 21 month old.
The verse that comes to mind is Psalm 20 1-5.May the Lord answer you as you are in distress, may he send you help from his sanctuary and grant you support; may he open doors for the doctor's and may you always have provision in your home. May he remember your love for him and may he accept your love as an offering. May he give you the desire of your heart and cover your child Esther with health and may all your plans succeed. We will shout for joy when you are victorious and will lift up our banners in the name of our God. In Jesus name....Amen.

God Bless,
Stephanie Egli & Family
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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

Friday, April 13, 2012

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