Born March 27, 2017 at 1:06 pm, weighing 6lbs .02 oz, 18.5 inches long.
We knew early on in pregnancy things weren't going as planned and after a trip to Cincinnati Childrens, they confirmed the worst. Diagnosed with anencephaly, encephalocele and microcephaly, a rare neural tube defect that is incurable. The dr's said that Roman's skull didn't close and that his brain is exposed to amniotic fluid. The Dr's said that he wouldn't breath on his own, wouldn't be able to eat, and would be prone to seizures. We were told to take our baby home and to feed, change and bath our baby and love on him as much as possible but if he even survived birth, that he would die within hours or days. Due to his skull, I opted to have him via csection with the NICU team on standby. But our little miracle came out breathing on his own! I called Cincinnati and told them everything he was able to do, that he was born breathing on his own and breastfeeding. Shocked, they told us to come out the next day because they were afraid of infection. So at 9 days old we went back to Cincinnati, expecting just antibiotics, but to our surprise, they discussed a possible surgery. We discussed all the risks and without surgery he stands no chance. They told us that even with this surgery, he could lose all the capabilities he has now and could be like a vegetable. After numerous scans, surgery is still pending and we are praying for a date. They plan to reconstruct his skull and put everything back in that's still functional. They say that he has more skull than most babies like him and has more around his brain stem, which is likely why he's still alive. We have been in and out of hospice care all this time and decided to come back home a week ago with hospice coming to our home now. Roman started having seizures on April 17th, and it's been one of the most terrifying things to watch your child go through, besides what's going on with his head. He is on several medications now and by the grace of God, Roman is now 2 months old and weighing 7lbs .04 oz, 23 inches long!! I don't know why the Lord sent me Roman, the Dr's can't give an explanation of why, just that the chromosomes changed in early pregnancy but what an honor it is being this sweet boys momma. The love and bond we share is like no other. I am very thankful for this time I've gotten with him, that's a miracle in and of itself but as any parent would, I'm selfish and don't want to let go. With that being said, I am begging you to pray!!!Please pray for my sweet little boy!
- Trish Trogdon
- Tiffany Casey
- Jennifer Castle
- Katrina Gent
- Tia Castle
Organizer and beneficiary
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more