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Nolatari

Heartbroken....

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I delivered my daughter Sophia Nicole Jackson on December 31st after being induced after she showed signs of distress. She spent the weekend in the NICU and was then transferred to Children's Mercy. She now has a working diagnosis of Pontocerebellar Hypoplasia Type 2 with some of the respiratory involvement of Type 4. She cannot eat by mouth because she has no gag reflex and must be fed via a nasogastric feeding tube. She will never reach any milestones...ever. She will likely die before reaching school age.

 

Two rough miscarriages, and now my only living child is dying? I'm done trying to have kids....I can't bury another child.

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You have a daughter.

 

Without in the least diminishing or dismissing what you're going through, you have a daughter.

 

My wife and I have been trying to adopt for eight years. I am well aware of the rage and despair of the childless.

 

You have a daughter. She needs you.

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So sorry to hear this. I was happy when your dad posted that he was gonna be granddad & such + to hear that you finally were able to deliver & now this.

 

Like Froggy says, you have a daughter. Cherish what time you'll have with her & enjoy the little things in life.

 

Again, so sorry to hear.

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I can't even begin to put into words how sorry I am for you. I believe though that you are strong and capable of giving her all the love she needs in the short life she has been given. My husband's and my prayers are with you.

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You have a daughter.

 

Without in the least diminishing or dismissing what you're going through, you have a daughter.

 

My wife and I have been trying to adopt for eight years. I am well aware of the rage and despair of the childless.

 

You have a daughter. She needs you.

 

I know, and she's beautiful. The neurologist says there's really no hope of her ever being able to understand or comprehend, but just looking at my baby girl and seeing that brightness in her eyes tell me that she DOES comprehend and understand me when I speak to her. My fiance an I have decided that, even if we are both carriers and there's a 25% chance of this happening again, there is a 75% chance that it WONT happen again. We see a geneticist in march (don't quote me on that) to see if we are carriers. If only one of us is, the chance of a repeat is only 5%, if neither of us are and this was just a spontaneous mutation that chance goes down to less then 1%.

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sorry to come to this thread late. Very sorry to hear of your latest tragedy, truly I am. As others have said, please cherish the time you have with your daugther. As someone with a progressive disability and married to someone with the same disability, only more severe, if you need someone to talk to, you are certainly welcome to PM or e-mail me.

 

Again I am very sorry to hear of this heartbreak

 

Matt

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