Natasha hadn’t felt the flutters of her baby’s feet for almost 20 hours and she was getting worried. At 8 months pregnant for the 6th time, she knew what it should feel like and this wasn’t it. Natasha rushed to the hospital for a stress test and ultrasound to make sure everything was ok but the family’s fears came true. In less than 10 min of arriving at the hospital, Natasha was on an operating table with only a local anesthetic. With the baby’s heart rate over 250, she needed to come out now. 

Fiona was born through emergency cesarean section, four weeks premature at Saint Vincents Hospital in Toledo, Ohio. Chris, Fiona‘s father and Natasha‘s husband, was an hour north doing a job walk down and building an estimate for an HVAC and exhaust system while all this trauma was happening. When he arrived at the hospital, no baby was to be seen, a few more hours past and neither Natasha nor Chris had seen or touched their bundle of joy. The NICU Doctor came into the room and explained that they weren’t able to get Fiona‘s heart rate under control even with medications and using the crash cart several times. The Doctor made the decision to life flight the baby to Motts Children’s Hospital in Ann Arbor, Michigan so she could get admitted into their cardio-PICU unit. 

Fiona fought off death twice those first 6 hours. Once the nurses and doctors got her heart under control, they noticed he leg twitching. With the amount of meds in her system she was in a medically induced coma and nothing should be moving. An EEG with camera was hooked up and discovered Fiona has having one to two seizures every 5 min. A few days later, when she was finally stable enough to move to the MRI machine, it was confirmed, her heart “looked like a bunch of grapes” as one doctor put it. Tubers were covering her heart and causing the misfires. Two calcified tubers were in her brain but one tuber was alive and growing, right into the lateral ventricle. Chris’ fear came true, he pasted on his genetic disorder and it was killing Fiona. 

After 17 days at Motts, Natasha was able to hold her baby for the first time. A few days later they Life Flighted Fiona from Motts Children’s Hospital to Cinncinnati Children’s Hospital. Motts was able to get the heart under control but not the seizures, the Neurologists who specialized in TSC (Tuberous Sclerosis Complex) at CCH were needed now. Within a few days the doctors had her on a regiment of meds which were helping control the seizures and on April 29th (1 month and 2 days after birth) Fiona was finally coming home but would never be out of the woods.

Over the last 3 years, Fiona would have 5 ambulance rights to the hospital, life flighted over 5 times, spend over 4 months in a hospital bed/crib, and has been diagnosed with number how health problems. Fiona was a pebble rolling down a hill, starting the avalanche that changed everyone in the family. The stress of this and the few hundreds on dollars in medical bills were a crushing weight on the family. For example Chris slipped into a deep depression and developed PTSD over all the medical problems, and most of the family would start taking ADHD, anxiety, and/or depression medications as well as seeing counselors on a weekly basis. 

We are a stronger family now than we have ever been but problems are weekly, bills don’t stop coming and the fighting never slows down for anyone in our family. Natasha went from a stay at home/ homeschooling mom to working part time at a nonprofit directed at helping school kids. Fiona’s 5 other siblings were sent to public school so they didn’t fall behind due to all the hospital visits and doctor appointments, and Chris left the IUPAT and Union construction for which he had 15 years experience in and went back to school for Physical Therapist Assistant while working part time at a nursing home. 

Help is needed! We have been trying to fight the good fight during the COVID-19 pandemic but still have collectors calling, morgage, propane, electric, and trash bills to pay as well as medical beds and other equipment still desperately needed for Fiona. She has changed all our lives and as a family we have become more empathetic, caring, and thankful for all the medical and mental workers around the U.S. This is a desperate plea for help, one that brings me shame to post because I feel like I’ve failed as a father and provider to my family. 

This is a summery of our story for which a blog or even a book would be needed to include all the details. We have fought through broken bones, COVID-19 scares, camping trips to get away from it all, and dealing stress to other family members. If interest in shown, I can continue the story.