Gemma's Fetal Surgery (MMC) Fund

Hi, everyone. 

My name is Lindsay. I have three amazing, nerdy, and active little girls -- as well as an equally nerdy and awesome partner, George. I'm 28, and a theatre and broadcasting student at Central Michigan University. I passionately love what I study, and hope to work in professional stage or technical theatre someday.

Recently, we found out we're expecting a new little girl to our family. Her name will be Gemma, and we're about twenty-two weeks along. 

Two weeks ago, there was an anomaly on a routine ultrasound scan. We were just told, "Something looks wrong." After a horrible, anxiety-inducing weekend of waiting, we were sent to the University of Michigan for an official diagnosis. 

Gemma has open spina bifida, in the lumbar (L) 4 or 5 region. It's the most common kind of spina bifida, but also the most severe. (Update: Recent MRI scans have showed that Gemma's lesion is around the sacral (S) 1 level -- lower than they initially thought, which is better for her movement!) It means her spine didn't close completely when it was forming, at the 4th or 5th week of development. She may have trouble with her feet, ankles, and legs, depending on how far the nerve damage goes up. She may also have bowel and bladder control issues. 

We also know she has what is known as the Chiari II malformation, where there is pressure on the back part of her brain, due to the spinal cord being exposed. She has some fluid on her brain, and may need a shunt when she's born. 

Right now, we're faced with trying to get into an in-utero fetal surgery program, to help minimize the damage that has already been done to Gemma. The costs are high, and we have to drive to Cincinnati Children's Hospital on Monday, February 22. There, we we will go through a two-day evaluation period for the surgery, to see if we are eligible. We're also looking at surgery from the Children's Hospital of Philadelphia; basically, whichever will take us, and whichever hospital will do it sooner. 

If we're not eligible for the surgery, Gemma will have to undergo surgery as soon as she is born to repair the open area of her back where the spinal cord is exposed. 

We're facing a LOT of driving lengthy distances in the next few weeks. I've also already had to pay hundreds of dollars out-of-pocket to get faster results on several genetic tests (an amniocentesis, etc); as this is a time-based surgery, and must be done before I reach 26 weeks of pregnancy. 

We also will most likely be hospitalized, or on hospital premises, for the remainder of the entire pregnancy. We're hoping to stay in a Ronald McDonald house for this time, if possible; but are still looking at a week to several weeks in various hotels while we're evaluated and waiting for surgery. 

To do this, both my partner and I will have to withdraw or take incompletes for the rest of the college semester in all of our classes. As full-time students with excellent grade records, this will be a large blow to us. We often depend on the money we get through financial aid to help us pay for food and lodgings throughout the semester. Pulling out halfway through the semester will cause issues with our financial aid, and may impact our grades. 

I also leave the care of my three older girls in the care of their biological dad and grandparents. They aren't able to accompany us to the hospital. 

We're terrified, right now. I honestly hadn't heard of spina bifida (myelomeningocele) until these past few weeks. We're worried about paying rent at our apartment in Michigan, needing a van for our girls and new baby (we drive a very small four-seater car at the moment), and hospital/medical test bills. 

We've been told the rough out-of-pocket cost of the fetal surgery is around 67,000 dollars. We're hoping to have most of this covered by insurance; but have no guarantee yet. 

Gemma isn't born yet; but we love her and want to see her here, healthy as possible, and in our arms. The surgery we are looking at is high-risk; and even if we don't qualify, we're still looking at a postnatal surgery for Gemma, and most likely several more for brain shunt placement or other difficulties associated with spina bifida that might crop up when she's born.

Right now, our family would be eternally grateful to you all for anything -- absolutely anything -- that you would be generous enough to provide to help us on this journey. Gas money for our hospital trips, for our medical tests and bills, for food and lodgings as we travel to Cincinnati and Philadelphia -- anything. As two young college students with a growing family, this diagnosis has been devastating thus far. We would welcome any help that we possibly could. 

Thank you all, so much, for taking the time to look at our story.