Our Quiverfull - Heart surgery for Baby Noah

Apr. 27, 2007

Heart surgery for Baby Noah

Yesterday Noah saw the pediatric cardiologist in Greenville. We got a lot of news and much of it is overwhelming. I will do my best to outline it here and will add updates as we know more.

First, the hole in Noah’s heart (the ASD) is not actually a hole. There is a flap between the two top chambers of the heart that allows blood to flow back and forth before a baby is born. The flap should close at birth, but Noah’s didn’t. This open flap essentially functions like a hole – allowing blood to mix between the chambers – but it isn’t actually a hole. There is no immediate danger from this. It does put Noah at greater risk for certain things like stroke when he is an adult, but if appears to be causing trouble at that point they can fix it then. There is no need to do anything about it now, and it is not causing the problems that Noah is having.

Noah’s symptoms and history are suggestive of two things. The first is a defect in his coronary artery. This could cause the problems he is having. The biggest concern with this type of defect is sudden death. The other most likely culprit could be a mitochondrial disease. There are many mitochondrial diseases with a broad spectrum of outcomes. They are all incurable and they are all degenerative. Many of them are the stuff nightmares are made of.

The coronary artery defects the doctor is concerned about are very rare, but they are extremely dangerous. For this reason we are going to MUSC Children’s Hospital in Charleston on Monday. Tuesday morning the cardiac team will be doing a heart catheterization and a heart biopsy on Noah. Even though these are relatively minor surgeries, it is a pretty serious set of procedures for an infant as small as Noah, but the risks of the defect are so grave that we simply have no choice. Our cardiologist is a strong Christian who prayed with us and told us that without a doubt this is the course he would take with his own child. If all is well, he will probably spend the night at MUSC Children’s Hospital on Tuesday night and come home Wednesday. If they do find a problem with his coronary artery then he will have open heart surgery on Tuesday or Wednesday.

Because Noah will be put to sleep for these procedures, our pediatric cardiologist is trying to interface with the geneticist about testing for mitochondrial diseases. These tests could include blood draws, a spinal tap, a large muscle biopsy (requiring sutures), and a bone biopsy. The goal is to do these procedures while he is already under for the heart procedures. This would mean one less hospitalization and one less sedation for Noah. The poor little baby is going to wake up feeling like he was hit by a truck. It will be weeks before we have the results from those tests.

We will be heading to Charleston sometime Monday so that we can have Noah at the hospital at 7:30 in the morning on Tuesday. It is about a 3.5 hour drive from here. We have a dear friend who will come Monday and stay until Wednesday, and the church will help with meals for those days. We really don’t know what we will do if he has the open heart surgery. Things would move very quickly and we would not be able to come home before the surgery, so if that happens we will be making plans on the fly as we get information.

We will be updating the blog on Tuesday or will have someone do it for us. We will also have more updates this weekend as we learn more about what is going on. I know this is just a rough outline but we are trying to get out the basic info and have a lot to add as soon as we have a chance.

Right now the key prayer requests are for the various doctors to interface and coordinate well so that we can have things done as easily for Noah as possible, for crystal clear wisdom for the doctors, and for grace and wisdom for us as we try to plan what could be a 3 day stay or a 10 day stay. As difficult as this all sounds, the heart surgery would probably be an easier outcome than the mitochondrial disease. The heart defect can be fixed, but the disease would only progress. It is also possible that we will rule out both issues and still be looking for the answer for Noah.

Please feel free to pass this blog address to anyone you know. We covet your prayers.

Blessings,

Kate, Jeff, and the children

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Comments

Apr. 27, 2007 - praying

Posted by leslirichards@comcast.net

Oh, Kate, I am praying for you and little baby Noah...I spoke to you at great length on the phone once about my son with autism when I ordered a kit from you...I am a neighbor of Jeannie Fulbright. I will keep you in my prayers as you go through this terribly difficult time. God is good and will see you through...lean into Him.
Lesli