On July 24th, 2016, Finn Samuel Herman was born…again.

           Finn was diagnosed in utero with the most severe form of spina bifida, myelomeningocele.Spina bifida is the most common permanently disabling birth defect in the United States.Complications, without any intervention, include permanent weakness or paralysis in the legs, hydrocephalus, loss of bowel and bladder control, orthopedic malformations, learning disabilities, urinary tract infections, latex allergies, and even death.Hearing this news at 20 weeks pregnant with our only child, we were shattered.We were quickly referred to the Children’s Hospital of Philadelphia and the amazing team at the Center for Fetal Diagnosis and Treatment.There, they began to pick up the pieces.Weighing no more than a pound, Finn had fetal surgery to repair the opening in his spine at 23 weeks gestation.

         Finn was born 6 weeks early at CHOP’s Special Delivery Unit, weighing just over 4 pounds.He spent the first month of his life in the NICU, remembering to breathe on his own, learning to nurse and gaining weight. 

        For the next several months, there were countless doctor’s appointments, feeding tubes, MRIs, bladder scans, apnea monitor alarms, obsessive hand-washing, sleepless nights and endless hours of physical therapy…but Finn was a fighter. 

        And eventually, the monitors and tubes were gone.The doctor’s appointments slowed.And Finn began to exceed our every expectation.Finn wiggled his toes.He listened intently as we read to him.He sweetly cooed in response to us.He rolled over with such purpose.He grasped a toy tightly in each hand.He squealed with delight at Daddy’s antics.He sat up straight without any support.He wildly ate anything we put in front of him.He scooted, pushed himself backwards and eventually crawled into every corner of the house.He cuddled with Mommy, for hours.He excitedly clapped his hands and waved at every stranger on the street.He mimicked every animal sound, memorized the pages of every book in his library, and danced to every song with reckless abandon.He pulled himself up to standing with strong, capable legs.And, now, he cruises around the coffee table with a proud grin and pushes his Radio Flyer around the block.He never ceases to amaze us.

          Finn’s life will never be simple or easy.He still faces many challenges.He does not have full feeling in his legs or the bottoms of his feet; walking will always be a challenge and he may require bracing or eventually a wheelchair.He will continue to have frequent MRIs to make sure he has not developed a tethered cord or cysts on his spine, both of which would require surgery.His bladder capacity has been affected and he will need medication and daily catheterization soon.It is also likely that he will have to catheterize himself throughout the day for the rest of his life to stay continent.Most recently, Finn has been having seizures due to the structural differences in his brain.

         But these challenges, these valleys, will never define him.And we will continue to celebrate every victory, every mountain top.And count them all as blessings.Finn is a constant reminder of God’s love, faithfulness and mercy.God heard our prayers.And His answer was you, our sweet, brave, Fearless Finn.

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