Gavin was born July 10, 2019.  For those of you who do not know, after delivery he spent three days in the NICU.  He has severe reflux and stopped breathing on four different occasions.  During his examination the doctors noticed his anus was particularly small.  He had difficulty having a bowel movement and the doctors instructed to follow up with his pediatrician.  After his initial exam with the pediatrician Gavin was sent to see a specialist at Childrens Hospital in Morgantown, WV. He was diagnosed with large cisterna magna, tortocllis and imperforate anus with fistula.  Large cisterna magna is an enlargement of the CSF filled in the brain. Currently this situation is  being monitored.  Tortilcoolis is a medical condition that causes contraction of the muscles in the neck which results in the head being twisted to the side or in a downward position.  He has physical therapy once a week for treatment.  Imperforate anus with fistula is an existing birth defect that occurs while the baby is developing.  The anal opening, rectum and nerves controlling bowel movements do not develop properly.  Gavin's anal opening is too small and is in the incorrect location.  He is currently having dilations (stretching of the anus) done twice a week between his local pediatricians office and specialists in Morgantown.  Gavin and his family have been traveling 2.5-3 hours (one way) away weekly for these dilation.  Sixty percentage of babies born with this diagnosis typically have another medical issue related to this birth defect.  Therefore, several other testing is required.  At five months old Gavin has had a MRI of the brain, two MRI's of his spine, x-rays, blood work, a kidney ultrasound, an echocardiaogram and a VCUG (catheter test of bladder). Each test was performed in Morgantown, WV.  For each MRI Gavin had anesthesia and was put to sleep.  The testing revealed he has a tethered cord.  Tethered cord means spinal cord movement is limited  within the spinal column due to abnormal tissue attachments.  On 12/30/19 baby Gavin will undergo surgery of his spine to release the tethered cord.  The surgery is about three hours long. He will need to lay on his back for 48 hours.  We do not know how long Gavin will need to remain in Children's Hospital after surgery.  Once home the recovery is generally 3-4 weeks.  Needless to say his parents have had to miss a lot of work, travel frequently and stay overnight out of town.  Unfortunately Gavin's parents have used all of their vacation time.  Any further work days missed are unpaid.  They already have numerous medical bills and they will only increase as Gavin will need to follow up with specialists in Morgantown over the next 1-2 years.  As you can imagine his parents are very stressed.  I have created this fund in effort to help relieve some of their stress by raising money for any medical bills, travel expenses, further testing and follow up appointments and for missed time at work.  Any amount of contribution will help their family and will be very much appreciated!  Please help spread the word and share.