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My daughter's second heart sugery


dkp

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My daughter, Sophia, who is just 5 1/2 months old has now had her second heart surgery and continues to be in the Pediatric Intensive Care Unit at Children's Hospital of Michigan. Please keep her in your prayers.

We are literally blocks away from Ford Field, the site of the 2006 Superbowl and had some of the Pittsburgh Steelers visit the hospital earlier in the week. We didn't see them, but my wife saw a young boy carrying a Steeler's helmet that had quite a few autographs on it. Some of the Red Wings players are regular visitors to the hospital as well.

If you are interested, I have a website containing a bunch of pictures and detailed news of Sophia's condition and progress. That site is:

http://atrmb.atrcomputers.com/sophia

David

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David,

Thanks for sharing the news. I visited your website, read many of the posts and viewed the photos. As heartbreaking as it is to see a baby like that, it is wonderful to know that modern medical science is capable of correcting that sort of thing.

God bless your child, your family, and your doctors.

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I just wanted to say thanks to all of you for the kind words, prayers and well-wishes. They are sincerely appreciated. I thought I would add a couple of photos of the three of us prior to her surgery, the second of which is not staged...lol I guess she had a little message for everyone!

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With older sisters, Victoria and Emma.

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First and formost I have said a prayer for your little girl.

I'm a MRI Technologist and have been in the field for many years. I worked for General Electric Medical Systems for several years teaching MRI in general and specifically cardiac MRI. I do all of the cardiac MRI at the large hospital where I work which also has a fairly large childrens hospital connected with it.

Any cardiac surgery is no walk in the park so to speak but not many people know how routine many of the cardiac defects children have repaired have become. I don't know your little girl's specific issue as you have not mentioned it, but VSD's, (Ventricular Septal Defects) are most common. They can be corrected to the point where a child can live a completely normal life post op.

There are many others as well, and the greatest chances are that your little girl is going to be just fine.

God bless you and your family,

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126mhz,

Thank you for the prayer and the information regarding CHD. My daughter has a defect known as Hypoplastic Left Heart Syndrome (HLHS). Rather than one defect, it is actually several. Unfortunately, it is the most rare of all heart defects, yet the biggest killer. Survival rates at 5 years are 70%. The latest data has not yet been published as there still is not a very good national registry, but the last set of published data gives a rate of nearly 1 in 2 that do not make it to adulthood. That being said, the past ten years has shown a much higher rate of success.

We elected to pursue a staged palliation consisting of three operations (The Norwood Procedure, Hemi-Fontan, or Bi-Directional Glenn and the Fontan procedure). Sophia has just had the Hemi-Fontan and was extubated today (removal of the ventilator). Our other options were heart transplantation or comfort care, meaning a sure end within a week or so.

If you are interested in learning more about this condition, I will add a couple of links for you. Thanks again to all for the encouragement. The past six months or so have been the most challenging months of my life.

http://www.americanheart.org/presenter.jhtml?identifier=1353

http://www.pediheart.org/parents/defects/HLHS.htm

http://www.tmc.edu/thi/lefthear.html

The Norwood Procedure:

http://www.uihealthcare.com/news/currents/vol1issue1/hlhs.html

The Hemi-Fontan Procedure:

http://www.nemours.org/internet?url=no/ncc/cardiac/flash_post_hemi_fontan.html

http://www.nemours.org/internet?url=no/ncc/cardiac/crd1600.html

http://www.med.umich.edu/cvc/mchc/parhyp2.htm

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