April 5, 2002.  This is how I saw Benjamin

for the first time after his birth.  The Dr.'s

had him hooked up to an EEG machine.


Benjamin McKay Orton was born on April 4, 2002 at Lakes Region General Hospital in Laconia, NH. Everything seemed great at first, he was our second boy and fourth child. As soon as he was delivered the problems began. They placed him on my stomach but after a few seconds they took him over to the warmer because he wasn't crying very well and he had swallowed some amniotic fluid. The nurses began suctioning and giving him blow-by oxygen. That lasted about 30 minutes and then they moved him out of our room into the nursery. I was able to see him about an hour later because I was informed by the doctor that he would be sent by DHART Ambulance up to the Intensive Care Nursery at Dartmouth Hitchcock Medical Center. When I saw Ben he was having full body jerks, the doctor's were not sure if he was having seizures or if they were muscle jerks. Two hours later the DHART team came and picked up my son and administered a loading dose of phenobarbital, an anti-seizure medication. Steven, Ben's father, followed the ambulance up to the hospital that night and when he arrived he witnessed a whole team of doctor's and nurses intubating him because the phenobarbital suppresses your respiratory drive. They put a breathing tube down his throat and placed him on a ventilator. I was able to make it up the next day and when I arrived Benjamin was having an EEG done to see if there was any seizure activity. The results were inconclusive because his brain apparently was too small and too far away from the electrodes to pick any activity up.  

Ben stayed in the ICN for a total of 11 days. During our stay we learned many things about our son. The MRI taken of Ben's brain showed that it was extremely small and underdeveloped. They called it "severe microcephaly" which means small head, small brain. Full body x-rays were taken because the doctor's discovered some anomalies that Ben had and they learned that he has what is called "chondrodysplasia punctata". This is a bone stippling disease that affects mainly the joints..  They were not able to tell us how this would affect our son in the long run. We also learned that Benjamin has a low thyroid called "hypothyroidism", he was put on a medication to help bring his thyroid levels back to normal. Another main issue that Ben had was feeding. It was very difficult for him to coordinate the "suck, swallow, breathe" reflux and so he was constantly coughing and choking whenever we fed him via bottle.  He received most of his nutrition from an NG tube.  (placed down the nose)  From the beginning when Ben was given the loading dose of phenobarbital for possible seizures, they slowly let his levels come down until they reached a certain point and then he was sent home on a maintenance dose so that the levels would stay between 20 and 30. Even though they couldn't prove Ben was seizing, the doctor's told us that all babies with severe brain problems have seizures and so it was better to have him on it. After being on the ventilator for 7 days, Ben was finally taken off and he was able to breathe on his own. What a wonderful day that was for us.  It was so good to finally be able to snuggle him and hold him over my shoulder. Four days later we took our little Benjamin home, along with multiple pieces of equipment.  There was everything from supplemental oxygen, a portable suction unit, a pulse oxcimeter to a feeding pump and disposable bags, medication, ambu bag and lot's of suction catheters and oxygen probes. We were told right from the start that Benjamin would probably never live off the ventilator, boy were they wrong.  He is such a fighter and as you'll read, he continues to beat the odds.