Charlotte's Story

I'm extremely honored and humbled to be able to share Charlotte's story! Her story began in May of 2015 when I found out I was pregnant and got a glimpse of God's sense of humor. I had literally just sold all of my baby stuff in April because my daughter was now 5 and I hadn't convinced my husband to have another baby. In August, I went for what was supposed to be my one and only high risk doctor visit. My husband and I realized something wasn't right when the ultrasound technician kept looking hard at the screen and repositioning the scanner. When she didn't say much and left to get the doctor, we really got nervous. The doctor came in and after looking at her pictures and scanning my belly himself, he asked if this was a wanted pregnancy or if abortion was an option before we went any further. That is not a good thing to ask an emotional, pregnant woman! He couldn't tell us exactly what was wrong, but they were thinking she had some intestinal obstruction. Unfortunately, I wasn't a stranger to rare diseases because just a couple of years before this, my mom died from complications of Scleroderma. It was in that moment that I realized why God waited to give us this baby. I couldn't have been the daughter my mom needed and at the same time the mother Charlotte needed. Around 30 weeks, I was seeing the high risk docs every other week. On that scan, they noticed things looked different and scheduled an MRI of Charlotte. The high risk doctors and the radiologist then began to think this was a lymphatic problem. Even though Jacksonville is a large city and has a lot of medical specialties, this was not something they had seen prenatally. My husband and I consulted with a pediatric surgeon around this same time and he was very confident that they could handle whatever the problem was and discussed the various possibilities. Charlotte was born on January 7, 2015 via scheduled C-section and sent to the NICU for observation. They decided to do an ultrasound and followed that with a CT scan to see if they could get a better idea of what was going on. She was eating great and seemed to be an otherwise normal, healthy baby. They eventually decided to do an MRI and that's when they discovered that all of her organs, except her left kidney and bladder, had been pushed to the right side of her abdomen. The lymphatic malformation was taking up the entire abdominal space. At a week old, they determined she needed to be transferred to Orlando for treatment, after consulting with Dr. Johnson. Little did we know, she would spend the next 7 weeks in Orlando. I spent as much time as I could with her, but having an older daughter that missed her mommy made it difficult! I spent many drives to Orlando crying because I had to leave my older daughter and many drives home crying because I had to leave my baby. I had more moments than I care to admit where I started questioning why God allowed me to have this sweet baby just to take her away! There were moments that I truly believed she'd never come home. The only things that kept me going were my faith in God, prayers, family and friends, and the amazing staff at Nemours! I still remember Dr. Johnson commenting that Charlotte would have a line of people waiting to hold her and sing to her! The nurses and other staff would be sad to see me come because that meant they wouldn't get to hold her as much. I sincerely never worried about her once while I wasn't there! Dr. Johnson was always there...either physically or via phone...to calm my nerves and answer any questions. The NICU doctors and nurses communicated daily with us and always included us in the decisions about her medical care. Finally, we got to bring her home the day before her official 2 month birthday and at 6 months, she was released from Dr. Johnson's care. This was the biggest answer to our prayers as we were expecting 2-3 years of trips and treatments. Dr. Johnson still has remained very much a part of her care and still makes himself available to us whenever we've questioned a treatment suggestion or had any concerns whatsoever! He even arranged a meeting with her current doctors to get everyone on the same page about her diagnoses and treatment. He is the most humble, down to earth man and I can't imagine how things would have turned out without him. We didn't know what we were in for when I got pregnant, or even after she was born, but the care and compassion that came from Dr. Johnson as well as the entire NICU staff, helped us get through one of our hardest times. I can't imagine what our life would be like without her and we're beyond grateful every day for the excellent care and love that she received during her first 2 months of life! Charlotte still has some obstacles to face, but she has a normal quality of life and will be almost completely normal! For anyone that's discouraged or feels like there may not be hope, I'd love to leave you with this passage...Psalm 139:13-14 "For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful..." This girl was made for a reason and she has a story to tell. I'd like to thank you for allowing me to share our story!