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My son was born nearly 5 1/2 months ago about 5 weeks early. His preemie status wasn't an issue nearly as much as was the fact that he had several problems, two of which we new about before.

First of all he was born with CDH, congenital diaphragmatic hernia. Basically, his diaphragm didn't form completely so his stomach, intestines, spleen, and one lobe of his liver was flipped up into his chest area. This was diagnosed when I was 24 weeks pregnant. About a week after he was born, they went in and fixed this by pulling the organs that needed to be in his abdomen back down into his abdomen and putting a patch where his diaphragm is supposed to be.

Then around 30 weeks, he was diagnosed with a VSD, or ventricular septal defect. This is what is known commonly as a hole in the heart. It was fairly large, would not close on it's own and had to be surgically fixed, which they did about 3 weeks ago.

After he was born, we realized he had an imperforated anus. With that, his but hole didn't form and they had to give him a colonostomy. He has an ostomy bag now and this is not bugging him at the moment.

About 2 months after he was born, he started developing hydrocephalus, or water on the brain. It was discovered that his brain wasn't growing and as a result, the sutures in his head were already starting to close. They will eventually have to go in and break those to fix it.

He has a hiatal hernia, which is common with babies who have CDH and they are talking about doing a Nissen, which will create a stronger "muscle" in his sphincter leading to his esophagus and putting in a G-tube.

The most minor of the birth defects that he faces is that he has a skin tag in front of his left ear. Of course, all of this is related.

He will be getting a trache put in sometime within the next few weeks becasue in 5 1/2 months time, he's only been able to be off the ventilator for, at most, 16 days.

To make matters worse, the geneticist at the hospital thinks that this is a genetic defect caused by recessive genes that my baby got from my husband and I. So, worst case scenario: there is a 25% chance that any other children I have will have the same or similar issues.

Is it ANY wonder I have migraines...lol. o.O XD

Anyone who has advice, know of anyone who's babies have had ANY of the things my baby does, especially the Nissen, trache, g-tube, or fixing his skull, I would dearly love you to reply.

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Thank you for sharing your personal experience with us.
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Hi my name is shelia, I was born with a vsd at birth and have had three open=heart surgery's since then, don't know much about the other stuff. but want to help if I can. I wrote a book about my life and its online so you can get it at and or at but my heart goes out to you. I am now 47 years old. so I have been through a lot of things since my birth. I was just wanting to help if I can. My first priority is my faith in God. and my second is to help others like me and my family. but my book is about all the osticles that I have been through and fit back with my faith and won. my book is called Growing Up With A Heart Defect and Faith. and it is all true about my life. So I hope it will help in someway. If not my email address is if you just need to talk. Im here for you. k. thank you and God bless shelia

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Also wanted to let you know I now have a thorasic aorta aneurysm too. So I know a lot about those as well. So if I can help in anyway let me know. thats why God put us here to be able to help through our troubles and triuphs. k thank you shelia
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I am a home health nurse, have worked with many of children that have overcome man of these difficulties. Be an advocate for your son ask questions , have them written down for the Dr at each visit. This will give you peace of mind and help you when  you are home questioning yourselves. No question is stupid and your Dr may learn alot about your child this way. You should see if you can get home health nursing to come in and help, most insurances will cover for a certian amount of time. Try and keep life as normal and work with him as much as possible , dont live in fear that you may hurt him, the biggest thing I see with special needs children is because of all the surgeries they go through is a delay in motor skills and learning , alot also start behavioral issues because they have been so confined and they start habits that have to be undone before again teaching them the right time. Belly time , sitting up, using hands to hold , point and grasp,physical therapy and occupational therapy can show you things then start a schedule at home were you do these things repetitively. It may look like they are doing nothing , ask them wha does this do . Ask your questions what ae you looking for and ask the therapist to lease communicate with you so that you can follow up. Hard love has got to be used in alot of situations, these babies have been so sick they learn to do things their way which is not always the right way, when reversing some actions be consistant even if they dot like it as long as it does not hurt them in any way. He wil be fine , they are so special and can love like no regular child. Enjoy all the rewards he can give you and others.
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