You think that something like this would never happen to you or your family...
I had a miscarriage 5 years ago and was told I might not have children. Flash forward to December 2016 when we find out we are pregnant. Since then, my pregnancy has been rough. I have been to the doctor and hospitals at least a dozen times.
But nothing seemed too severe. We would find out it was a boy, we would name him Blake.
I would later have complications with a shortening and funneling cervix, putting me at high risk for pre term labor. That alone was enough to put us in intense panic mode.
We went in for a checkup to see how I was doing and check his growth.... and we ended up finding out something you can never prepare for. He's missing the bridge between the two brain hemispheres in his brain. (Agenesis of the Corpus Callosum). It's a rare birth defect (1 in about 10,000 babies born like this). The effects are so variable it's impossible to know if this will barely change his development or severely mentally and physically disable him.
As if that news wasn't enough to put my whole life in a panic mode.... Blake decided to come out and meet the world at 30 weeks. I went to the hospital for contractions at 4 pm on Wednesday May 31st and ended up delivering at 11:08 that same night. I was able to hold him for a brief while and then he was whisked away to NICU.
Blake is now facing a very long journey. He has been on a CPAP to help him breathe. He has been on and off photo light therapy. He has been poked so many times for bloodwork and IVs I have already lost count. He's looking at about a 6-8 week stay here, if everything keeps progressing. We just don't know.
I want my child to live a happy, healthy life and I am terrified. I had to quit my job abruptly. Josh is already working 24.7 to support me and my stepsons, and to close on the house we are building. We have had to switch to The Devos Children Hospital for Blake to see doctors who specialize in neonatal care. We have also had to emergency file for new insurance to try and aid the piling hospital bills and the inevitable reality that Blake will have to see many, many more doctors and therapists. The daily costs alone in the NICU add up very quickly.
We are supposed to be closing on a house in six weeks and I am out of work indefinitely. I want to have everything ready for our precious baby to come home to. We need help. We need prayers. We need everything to go in the right direction for our very tiny little fighter.
- Amanda Carboni
- Meghan Palmer
- Amanda Marquardt
- Jenny Bracht
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