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01-23-2007, 09:31 PM
[left:dda89e806e]http://www.cherubs-cdh.org/Album/new/Jennings-gregory.jpg[/left:dda89e806e]When I received your newsletter it kinda stunned me---you see I lost baby Greg 3/14/94. He was just a year and 10 days old. I loved him so much!

To let you know a little bit about baby Greg's history, here is how it began. When I was around five months pregnant, I begged my doctor for an ultrasound, not that I thought anything was wrong, but just to make sure the baby was okay. During the first ultrasound the defect was found. A large hole on the left side of the diaphragm. This was a total shock to me especially since I had a healthy three year old son. After that I went from doctor to doctor--had lots of ultrasounds--just to have the same answer from all of them, babies with a defect this large found early in pregnancy usually do not survive.

I was given alternatives such as abortion, where and who would perform one at this stage of pregnancy. I was also asked, "How far do you want us to go to save the baby?"

I had an amnio done which was good--no brain damage or etc. I was told my son would probably die at birth since he wouldn't have much lung tissue formed. Boy! To everyone's surprise, he was born pink and he cried. They took him straight from me to prepare him for surgery. And when I questioned his neonatologist if he would survive, he answered, "Never under estimate a baby." My full trust was in him from then on, he was the only one who had given me hope.

Surgery was done hours after his birth and even though he was oxygen dependent, NG-tube fed, and on various medications, he did well.

A few times I took him to Milwaukee Childrens Hospital to lung specialists. At age one on his birthday, Greg began requiring oxygen again and had developed pneumonia in the right lower lobe of his good lung.

The local hospital insisted on treating him instead of transporting him to the hospital where he was born (only 45 minutes away). When he had been there five days they transported him but it was too late. Baby Greg was put on a ribroviviar which he should have been on much sooner. He went into code three times.

I had a lot of anger toward our local hospital and the doctor and am still dealing with the grief.

Our neonatologist, Dr. Costakas, who dealt with us from the beginning, is an excellent doctor. He wrote a couple of articles on our son and had them published in a perinatology magazine.

I did allow an autopsy to be performed and Dr. Costakas learned a lot about his lungs and etc. A little note: we were always so worried about his patch breaking again but it never did. It even survived CPR on two occasions.

Well, I guess I've mentioned most of the stuff that went on with our son. But I really wanted to write and let you know that you and your doctors are welcome to the results of the autopsy. It may shed some knowledge about lung growth and etc.



Written by Gregory's mom, Jessie F Jennings (Wisconsin)
1996