January 31 has forever left an imprint on our lives. This day is significant on two different occasions. The first was the year of 2014, when most parents are excited at finding out what they are having at their 20-week ultrasound, we were given the news that our little girl had developed fetal hydrops and needed an immediate referral to Dr. Vlastos at the St. Louis Fetal Care Institute at SSM Health Cardinal Glennon Children’s Hospital. This is where our journey begins.
For the next 16 weeks Fallon received care and had to have in-utero blood transfusions until she was born on May 21, 2014. We had no diagnosis or knew what was wrong with our sweet baby girl. She spent 16 days at SSM Health St. Mary’s Hospital’s Neonatal Intensive Care Unit (NICU) for pneumothorax, where I never left her side. From there we were referred over to Dr. Bhatla in SSM Health Cardinal Glennon’s hematology/oncology department. Fallon continued to need frequent blood transfusions and would develop sepsis-like symptoms which would lead us to frequent hospitalizations. Glennon became our second home.
After months of waiting and a bone marrow aspiration, we finally had our diagnosis on January 31, 2015. SIFD (Sideroblastic anemia, immunodeficiency, fevers, developmental delay) a terminal mitochondrial disease. There were only six people throughout the world that were known to have this rare genetic disorder. We were left in shock, heartbroken and scared out of our minds.
Within the next few months, Fallon progressed and developed hearing loss, vision loss and febrile seizures. At this point we had to do something. We attempted a bone marrow transplant in July of 2015. Two days in of receiving chemotherapy, Fallon suffered a catastrophic seizure that lasted two days, even while intubated in the Pediatric Intensive Care Unit (PICU). At this point, I didn’t know if I would ever get to hold my baby again. We put our trust in God and in the hands of the doctors and nurses. Fallon made a miraculous recovery and I was able to hold her again. She suffered a traumatic brain injury from the seizure and is closely followed by the cerebral palsy clinic.
Since then, Fallon has had numerous surgeries, a colostomy, hospitalization and what we call frequent flights to SSM Health Cardinal Glennon. Fallon is followed by oncology/hematology, immunology, neurology, complex care, GI, audiology, ophthalmology, cerebral palsy clinic and surgery. I cannot speak more highly of all the doctors, nurses and staff. They have become family to us. Everything that we went through emotionally, and are still going through, they have been right there right along with us. SSM Health Cardinal Glennon truly is our second home and I think God put us here for a reason. What that reason may be is still unknown, but maybe it’s possibly the miracle we’ve been waiting for. We are forever grateful for each and every one of you and cannot thank you enough.
– Katie Heimbecker