Whether he’s riding with his family on their all-terrain vehicle (ATV) at home in Mississippi, learning how to fish or playing with his cousins, Ethan Claborn is happiest when he’s outdoors. Simple things like a blade of grass or drop of rain are even more special for this almost four-year-old, considering he spent the first year of his life within hospital walls. …
Medical research is not a field for people who like instant gratification. There are long waits as cultures grow, proteins crystallize and cells divide. And when a discovery finally becomes something tangible, like a medication, it can still take years of testing and government approvals before a patient can benefit from it.
But what happens when a life is at stake and time is a luxury the patient simply cannot afford?
That is the question asked by NBC News’ Rock Center in a recent piece they did on Boston Children’s Hospital surgeon, Mark Puder, MD, PhD. Puder has help develop a potentially life saving drug called Omegaven, which he’s been using to help reverse fatal liver disease in infants. However, despite the drug’s effectiveness in Puder’s patients, the Food and Drug Administration has yet to approve its use nationwide.
When my son Peter and I go out, it’s not unusual for people to fawn over him a bit.
“What a happy kid.” “He’s so smart.“ “It makes me smile when I see him,” we often hear. As a mom raising a child with as many health issues as Peter has faced, these comments brighten my day.
Peter was born with anarteriovenous malformation (AVM) in his liver, meaning his veins and arteries weren’t connected properly. When he was just seven months old, the AVM completely disrupted the blood flow to his liver and small intestine, causing multiple holes in his small intestine. He became gravely ill after that. At our local hospital, Peter had one surgery to remove the AVM and three more to salvage what was left of his intestines.
When it was all over, Peter had four ostomies (a surgical opening made in the skin as a way for waste products to leave the body) and a gastrostomy (a surgical opening into the stomach, where a feeding device can be inserted). He couldn’t digest food properly, so he had to receive all his nutrients intravenously (IV), through a medication called total parenteral nutrition (TPN).
Having a child on TPN is a lifestyle, for both patient and parents. It requires refrigerating IV bags and medications, and storing huge amounts of tubing, caps, alcohol preps, pumps, dressing change kits, and other supplies. There is a daily ritual of preparing the medicine and hooking it up, and because TPN requires a permanent central line for IV access, there is always a risk of infection that needs to be closely monitored. …