My daughter has been given a death sentence...
I don't even know how to write this.
My daughter turned one month on the fifteenth. I didn't realize what a milestone this was.
If you haven't been following our story, Georgia was born at 4 pounds 5 ounces. We were told through our entire pregnancy that our daughter was healthy, normal, and growing well. Although my instincts told me something was wrong, the doctors insisted I was overreacting... until the moment she was born. She didn't cry. And her low birth weight was a shock to all of us. She had palsy in her face and her hands and feet were slightly misshapen. She stayed in the special care nursery for 10 days. When we left, we thought the worst was behind us. They told me she had IUGR, but should be fine. They told me the placenta failed and the umbilical cord failed, causing her issues. I asked for genetic testing, just to be on the safe side. They said the test takes two weeks...
Two weeks came and went, and no word. I thought maybe that was good news. We started getting letters in the mail from the State Health Department talking about helping with Georgia's disability. Her disability? I assumed they meant her size. I was so confused.
On Friday, I had called my pediatrician twice and left voicemails but hadn't heard anything back. Frustrating... I then called the hospital she was born to ask about the testing. They told me the results came in Tuesday and they would have my pediatrician call.
A receptionist called me shortly after... around 4. She said it plain as day... Georgia tested positive for Trisomy 18. I panicked, and asked what it meant and she told me to look it up. Look it up? What? She told me a genetics counselor would need to talk with us. She gave me a number. I hung up and called them immediately. They told me that they couldn't give me any information because her case was still being reviewed and that they would call us when they were ready to schedule an appointment.
The overwhelming panic...
I told my husband. I googled Trisomy 18. Very rare. Not compatible with life. Only 10 percent live past age one.
My daughter is dying. They let me go home. What does this mean?
My husband refused to hear it. He made a thousand phone calls but our pediatrician dropped the ball and no one would give us answers. Just keep taking care of her they said. We will let you know.....
We told his father, his son.... but I haven't told my parents or sister yet. I can't. I don't know how. My dad has terminal cancer and my daughter has been the little bit of light in the darkness. This will just give my family another bullet to bear. How do we do this? What happens now?
I don't know how to feel. I'm mad and I'm mourning. I hold her, and I wonder what kind of life we will have together. I didn't plan on anymore children but I think this changes it. I feel selfish for feeling that way. I feel like my life is over and I feel like I've lost the life I imagined her to have.
I feel just... overwhelmed. And scared. And hurt.
I just can't let her go. I just want to spend the rest of my life holding her and smelling her hair and feeling her fingers grip mine.
I can't do this.
I'm sorry. Thank you if you made it through this vent.
Please say a prayer for us. My family needs it.
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