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Old 11-17-2012, 08:02 PM   #1
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Soft spot closed early on my niece

My 9 month old niece has had a rough go of it. She was born with a herniated diaphragm, her liver in her chest pressing on her lungs and heart, clubbed hands, lower setting ears, small eyes, unusually long hands, fingers, feet, and toes. She wasn't swallowing well so a g tube was out in. Then she wasn't digesting her food so had severe vomiting and weight loss so a g j tube was put in. Then during one of her many surgeries they decided to put in a breathing tube into her neck. She was sent home but had to go back several times within the first week. Once because her feeding tube was accidentally pulled out. This turned out to be a good thing because she actually had too big a tube put in the first time. The last time though was because my sister went in to check on her after the night nurse left to find baby wasn't breathing. As my BIL did CPR my sister called 911. After the local hospital stabilized her they had her airlifted to St.Louis. Turns out she had the wrong size breathing tube in as well. Then they couldn't get her weaned from the breathing machine so they couldn't send her home. She has had several surgeries since to help her. The last one it was found her hernia reopened and allowed her liver to migrate back up into her chest. The reason they couldn't wean her from the oxygen. She seems to be doing really well now. They were able to remove her j tube so only has a g tube. She is almost completely weaned from supplemental oxygen and was even sitting in a bumbo. She smiles and interacts with others. Grabs her feet, recognizes the gum brush and remembers she doesn't like it.

Now the doctors say her soft spots have closed up prematurely. They want to do surgery to open them back up. Has anyone here had this done on their lo? What does it mean for her continued progress? Will she lose some of what she has gained?

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Old 11-18-2012, 05:58 PM   #2
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Re: Soft spot closed early on my niece

No experience with the surgery itself but did want to say you need to be real careful when agreeing to this surgery. Sometimes the soft spot closes early because the brain just isn't growing. My son's closed early but no big since his brain was done growing. We had the benefit of a genetic diagnosis so we knew what was up with him neurologically. I have no clue how they determine which came first the closed soft spot or the brain's lack of growth in other cases. My guess would be high cranium pressure would indicate a soft spot prematurely closing while the brain is growing but that is just a guess. Something I would definitely research since I know of one case where the brain was small and the neurosurgeon was reckless and opened up the soft spot several times despite evidence it was closing due to lack of brain growth. It makes me sick to think about how many times that small child was put through major surgery for no good reason at all.
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Old 11-18-2012, 06:03 PM   #3
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Re: Soft spot closed early on my niece

Hmm interesting I hadn't thought of that. We will definitely have to look this up.

How old was your son when his closed up?

Unforunately for the diagnosis my niece is genuinely unique. Other than her list of symptoms no one knows anything. The doctors have ruled out genetics and any other disease they have so far thought of.
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Old 11-19-2012, 09:21 AM   #4
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Re: Soft spot closed early on my niece

It was before 9 months but I think after 6 months. I will have to pull his baby records to be sure. I will try to do that before this afternoon but no promises. DS just got out of the hospital and I am trying to schedule a procedure so they can check into what is triggering these crisis events.
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Old 11-19-2012, 09:57 PM   #5
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Re: Soft spot closed early on my niece

Alright at his 9 month check up anterior frontal still was a finger tip apart according to the ped's notation. I think it was much smaller then that though because there was only an extremely small amount of growth between 9 month check and the 12 month check 1.2 cm to be exact.
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Old 11-20-2012, 09:59 PM   #6
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Re: Soft spot closed early on my niece

Thank you. I asked my sister to check into this. She said this was something they were looking at. So the surgery isn't yet a sure thing. They are waiting to see how her brain grows and perhaps for pressure on the brain? I wish they could identify her syndrome. At least then we might have some idea what to expect for her.
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Old 11-21-2012, 07:22 AM   #7
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Re: Soft spot closed early on my niece

I just wanted to say that I hope they figure out what it's going on with her; that sounds so stressful for the baby and her parents
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