Help Fund Journey's Life-Changing Surgery

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Hello, my name is R-Riana Spivey-Johnson.

I am the mother of Journey (JC) and I have been advocating for her way before she was born.

Today Journey is one-month-old. She was born with a rare cranial deformity called an Encephalocele. An encephalocele is a rare birth defect. An estimated 1 in 10,500 (400) babies are born with the condition in the United States. With this condition the tissue covering the brain, and part of the brain itself, protrude through openings in the skull. Journey’s particular encephalocele is called Meningoencephalocele (meninges, cerebral fluid and brain matter).

On December 5th, 2023 at only 13 weeks, we found out about Journey’s diagnosis. Prior to this we had no idea what an encephalocele was. I went online and did research to learn more. I was seen at Metro Health and University hospital where both of my doctors suggested that I “terminate” the pregnancy. Termination was mentioned multiple times over the next 9 weeks. Journey was my child and she deserved to have a chance at life. I decided to carry the pregnancy to term. Once this decision was made, I joined an encephalocele support group. Here I found information on different surgical repair options.

During the duration of the pregnancy doctors warned me of things like “these babies usually don’t make it through the third trimester. They usually pass in utero,”. “If she is born it would be for minutes., hours.” “If you carry to term the baby won’t have any quality of life and be in a vegetive state.” With all the negativity surrounding Journey’s birth we prepared for the worst (her passing). Obviously, we wanted our child to survive, but we hadn’t planned on leaving the hospital with her. We hadn’t purchased any baby items prior to her birth. We are accruing items as we go.

On May 15th, 2024 Journey made her entrance into the world, kicking and screaming. The first hour passed, then 3, and 5….. Journey was striving and beating all the odds that the doctors doubt her of. Doctors said, “if she is born alive she won’t be able to breath on her own, eat, or swallow.” She came out and rocked all of that. Over the next 3 weeks Journey would go from 2 different hospitals and hospice before finally making it home.

Once Journey was born, I reached out to two of the hospitals in Cleveland to see if anyone would perform surgery on her. She was denied by both hospitals (because “the risk wasn’t worth the reward”}. When I was pregnant, I’d reached out to Boston’s Children's Hospital. Now that Journey was here, I decided to reach back out to them to let them know that she was still alive and doing well. I also reached out to Children’s hospital of Philadelphia and Nationwide Children's Hospital. We finally received good news from these hospitals. Someone was finally giving us some hope. They are willing to perform cranial/ plastic reconstruction.

At this point, Journey’s encephalocele has doubled in size. It weighs about 4 pounds. Cerebral fluid continues to fill the “cele”. Due to the size of her “cele” and the fact that it continues to grow it is making it difficult to care for her. It is hard to pick her up and she is unable to lay flat on her back or turn her head. Currently she’s only able to lay on her sides. With successful surgery doctors should be able to reduce the size of her “cele” and reduce the accumulation of fluid (with a shunt).

This is where I need the help of our supporters. We are asking for donations for the following things:

We will need to travel.

Travel expenses

Medical expenses

Meals and gas

Boarding accommodation (a minimum of 2 weeks, but it could be up to a month)

Special car bed seat (Her “cele” is growing and she is outgrowing the seat she currently has.)

Loss wages to cover bills due to being on unpaid leave.

Prayers and monetary donations are greatly appreciated. Help give Journey a second chance at normalcy.

To learn more about Journey and follow her journey search the hashtag #JcsJourney for more information and updates.