Caring for Carter- VOGM/Hydro

In 2010, my younger brother, Todd married my best friend and coworker, Jamie!  She taught kids with special needs as an Intervention Specialist for seven years until the current school year when she was hired to teach third grade with me!  Jamie was looking forward to having her own classroom. We both had baby boys two days apart over the summer and brought them into the school to set up our rooms with brightly colored posters and bulletin boards. Things were going perfectly.  On August 13, Jamie took little Carter to the pediatrician for his two month well-check.  He was reaching all his milestones, but his head circumference had spiked off the charts.  The doctor scheduled him for an ultrasound to rule out hydrocephalus.  This was thought to be precautionary.  After all, Carter was eating well, cooing, and smiling! Jamie and Todd were nervous, but deep down they truly didn't believe their baby boy could have hydrocephalus. On the very first day of school, August 20, 2014, Jamie began teaching third grade for the first time.  The first hour and a half went well. She was learning about her new students and establishing her classroom routine.  At 10:20, Jamie dropped her students off at library class and left the building to pick up Carter from my mom's house.  The plan was to run him to his ultrasound appointment, take him back to my mom's, pick up pictures of our students for a project at Walgreen's, and then head back to school.  Todd had met her at the Children's Close to Home Center in Dublin. Little did they know, their lives, and that of their two month old baby, were about to change forever.  They were told right away that Carter did in fact have hydrocephalus and would need to have a permanent shunt placed inside his head to relieve the build-up of cerebral fluid.  The news of surgery hit hard, and Todd and Jamie were immediately off to Nationwide Children's Hospital.  While there, they had little time to digest and accept Carter's diagnosis. But Carter's complete diagnosis didn't stop at hydrocephalus. Before his shunt surgery, Carter had an MRI which showed that he has a type of aneurysm deep within his brain called Vein of Galen Malformation.  This is a birth defect that usually forms in utero between 6 and 11 weeks gestation. It causes hydrocephalus, brain damage, and heart failure.  Most babies are diagnosed before birth due to enlarged ventricles and heart failure shown on ultrasounds. The mortality rate for babies diagnosed in utero is close to 100%.  Todd and Jamie were told that another diagnostic MRI would be needed.  If this MRI showed that Carter's aneurysm was symptomatic, he would need immediate embolization surgery and had a 50/50 chance of making it through. Luckily, after further tests, and hours of waiting, Carter's aneurysm was shown to be asymptomatic and he had no signs of heart failure or brain damage. Embolization surgery could be held off until Carter's ventricles grew larger. This would increase his chances of making it through a surgery that he most definitely would need. They could go ahead and proceed with the shunt surgery as planned. This would manage the hydrocephalus.  Todd and Jamie were ecstatic.  The shunt surgery was supposed to be a 20 minute procedure with a 1-2 day recovery!  They would soon be taking their baby home. After the surgery, however, Carter had a hard time waking up from the anesthesia. He was sent to the ICU for observation. He started responding and was sent back to a regular room where he then started seizing over and over.  Once again, he was sent for further tests and back to the ICU.  The doctors found that Carter had suffered a brain bleed during the shunt surgery.  One step forward, two steps back.  Carter was given many different types of medication to control his seizures, but eventually needed to be intubated with a strong medicine that required him to be on a ventilator and feeding tube. Once his seizures were under control, they weaned him off the medicine and removed the feeding tube and ventilator.  He was sent home after 13 days in the hospital!  Five days after his homecoming, Carter's soft spot started to harden and he wasn't acting like himself.  They were back at Children's to be monitored for 48 hours.  He didn't have any seizures, but they thought that his shunt may have been partially clogged, so they tapped it with a needle to get it moving.  He was sent home on Tuesday, September 9 around 5:00 p.m.  Upon arriving home, Carter vomited.  Todd and Jamie decided that at least one of them should be awake watching him at all times, so they took turns sleeping while the other basically stared at their son.  Around 4 in the morning, Carter began seizing again.  During these times, he would stare off in the distance, his lips would turn blue, and his oxygen would drop significantly.  They called the neurosurgeon and were told to give him emergency seizure medication and either call 911 or rush him to the ER.  In less than ten hours of being home again, they were back in the ICU where Carter continued to have seizures that would cause him to stop breathing.  Once again, he had a needle inserted to "tap" his shunt to get things moving. There were talks of shunt revision surgery and an external shunt being placed on the opposite side, but the risk of suffering another brain bleed was too risky.  This brings us up to the present.  Carter turns 3 months today on September 11 and is being monitored in the ICU at Nationwide Children's Hospital.  Three weeks have gone by since Carter's first ultrasound. He and his mommy and daddy have been on a roller coaster ride of emotions.  He has a very long road ahead of him.  Even once he's out of the woods from his current state, Todd and Jamie still have a lot of research to do!  VOGM is so rare that only a handful of neurosurgeons are familiar with it.  Since Carter will eventually need to have numerous embolization surgeries, Todd and Jamie will be taking unpaid time to travel to different states around the country to meet and talk with neurosurgeons.  In the meantime, Carter will have appointment after appointment and test after test. Some procedures may not be covered by insurance. He will also have to be monitored at all times for seizures, shunt malfunction, and signs of heart failure. They also have a two-year old daughter, Kaylie to take care of.  She's been put in daycare more than expected already! They have MANY seen AND unforeseen expenses coming their way, so I'd like for everyone to consider donating to their cause!  They are the most responsible, loving, and deserving people I know.  We appreciate the support of everyone and wish for continued prayers for Carter's recovery. PLEASE help them out and don't hesitate to contact me with any questions. I'm trying to learn about Carter's condition as much as I can. I will be updating this page and editing it as I learn more. Thanks and love to you all!