All tips given the month of December will be donated to the Noah Brown family of Celina. Noah is 8 months old son of Eric and Claire (Hemmelgarn). Claire chose to go part-time in her job for HCF Management and Eric works full-time at Crown on third shift so they can be available to Noah. Noah was born on March 15, 2023 by urgent C-section. Claire had gone for what she thought was a routine OB visit but Noah was not reacting appropriately on his stress test. He was born not breathing and needed resuscitated for the first 45 minutes of his life. Noah was born with club feet and displayed other anomalies which indicated arthrogyposis (a congenital condition). Noah was quickly transferred to Dupont Hospital NICU in Ft. Wayne after his birth for 3 weeks. There, it was discovered that Noah had reflux and aspirated feedings so he had a G-tube inserted so he could safely be fed. Weekly ortho visits to cast Noah’s legs to correct his club feet was needed for 8 weeks.
As Noah grew, it became apparent that he was not developing in a normal way. Claire and Eric saw specialists at Dayton Children’s to find a diagnosis or reason for Noah’s delays. They discovered that his optic nerve was not normal so his vision was in doubt and he was fitted with infant glasses. On Sep. 27, he had not been acting normal, so Claire and Eric called his local pediatrician and they took him to the babysitter. Soon he had a fever of 103. Claire took him to Mercer Health where he was seen and then transferred to Dayton Children’s as it appeared he had pneumonia. The transport unit from Dayton Children’s quickly intubated him to decrease his work of breathing and he was admitted to the PICU with septic shock. Noah’s body was exhausted from fighting his infection and was now in a state of grave inflammation and infection. After a few days on the ventilator, Noah was extubated and thought to be improving until Oct. 6 when he aspirated a large amount and coded. He was a difficult intubation at this point and he became even more critically ill. It took almost 2 weeks for Noah to be extubated and during this time, other problems were identified. He needed a different type of tube to safely feed. Also, he seemed to hold his breath when agitated or in pain, and sometimes these episodes caused a drop in his heart rate. He was started on medicationsto control this. On Nov. 1, after 5 weeks at Dayton Children’s, Noah was transferred to Cincinnati Children’s for a pacemaker insertion to prevent drops in his heart rate that the medication was not correcting. This was an invasive procedure involving opening Noah’s chest and sternum to implant the pacemaker wires and device. Finally, on November 9, Noah was discharged and able to return home to Celina.
As Noah was being treated at Dayton, it was discovered that Noah has an ultra-rare genetic mutation called ZARD with only 250 reported cases worldwide. This mutation seems to affect muscle tone and strength in all areas of Noah’s body including his eyes, GI system, and skeletal uscles. Noah also seems very sensitive to stimuli so he is often fussy and irritable. Very little is known about this disorder so no one can predict the journey the Brown family is on. The only constant is their incredible love for Noah and dedication to giving him the best care possible. Noah loves sounds, lights, and sitting in his Boppy pillow. Let us keep the Brown family in our daily prayers. Your generous tip will help cover their ongoing medical bills. Thank you and God Bless.
December 2023
