Our little girl Esther's CDH story: surgical report

Wednesday, April 25, 2012

surgical report

Received a call from our friend and church pastor, praying and encouraging us for the day. Know that your prayers are being answered. God has given us an a calm that is a little hard to comprehend. In a time that I would expect to be sick with worry, I actually feel His joy. Please continue to pray.
After hanging up with him, we got a page from surgery stating that they started around 0945 and things were going well thus far. They plan on updating us again when they are nearing completion. Here is another verse I was just reading that seems appropriate for everyday, not just today.

Psalm 51:7-11

New International Version (NIV)

⁷ Cleanse me with hyssop, and I will be clean;
   wash me, and I will be whiter than snow.
⁸ Let me hear joy and gladness;
   let the bones you have crushed rejoice.
⁹ Hide your face from my sins
   and blot out all my iniquity.
¹⁰ Create in me a pure heart, O God,
   and renew a steadfast spirit within me.
¹¹ Do not cast me from your presence
   or take your Holy Spirit from me.

2 comments:

AnonymousApril 25, 2012 at 10:58 AM
I have been praying all morning for courageous little Esther and will keep praying until she is safe and sound in the arms of her parents. God Bless!
ReplyDelete
Replies
SheilaApril 25, 2012 at 11:50 AM
I have been praying for your little girl all morning, that her Father God would be her healer and her deliverer through this procedure. May He sustain you while you wait and trust.
ReplyDelete
Replies

Add comment

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, April 25, 2012

surgical report

Psalm 51:7-11

2 comments:

Total Pageviews