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.
Workers from Walsh Brothers Incorporated are keeping very busy building a new tower at Children’s Hospital Boston, but the workload isn’t so fast paced that they can’t take a second or two out of their day to make some kids smile. The crew receives the names of patients whose hospital beds face their construction site and before a beam is attached to the tower’s frame they spray paint a child’s name on it, as well as an encouraging message or two.
To kids facing medical hardships seeing his or her name on the side of a building may not seem like a big deal, but the parents of these kids say it’s a little gesture that goes a long way.
Scheduled for a late 2013 completion, the new building will:
- provide the Hospital with 20 ‘short stay beds’. (i.e. 23-hour Observation beds)
- allow the Hospital to better utilize our existing DPH-licensed beds.
- allow for critical expansions of the Emergency Department.
- provide an increase in Radiology capacity, additions to Surgical areas and provision of new inpatient support spaces.
- provide as many as 34 single bed Inpatient rooms to meet future needs for specific subspecialties.
To learn more about how Children’s treats neuroblastoma, a rare type of cancer that occurs most often in infants and young children, or speak with one of our pediatric oncology experts, please contact the Dana-Farber/Children’s Hospital Cancer Center (DF/CHCC).
Brian Skotko, MD, MPP, a physician at Children’s Hospital Boston’s Down Syndrome Program, recently wrote an Op-Ed piece for USA Today, where he addresses concerns raised by a new, easy to administer blood test that can screen for Down syndrome in-utero. In the piece, Skotko wonders what effect the simple and affordable test will have on the birth rates of children with Down syndrome and discusses his own research that shows that a majority of families living with a Down syndrome family member cite the experience as positive.
In mid-October, pregnancy as we know it forever changed in America. The company Sequenom announced that with a simple blood draw at 10 weeks of gestation, a pregnant woman can now learn with near 99% accuracy whether her fetus has Down syndrome. …
With these new tests, however, America also confronts expectant parents with a parade of uncomfortable questions. Currently, only 2% of pregnant women are pursuing chorionic villus sampling or amniocentesis. Now, with the simpler blood test, the percentage of women who may choose to undergo testing will grow, if not skyrocket. As the doctors phone the news of the results, more and more expectant couples will be frantically asking: What does it mean to have a child with Down syndrome? And do we really want to find out?
My research colleagues Sue Levine, Rick Goldstein and I recently surveyed more than 3,000 families nationwide who have a member with Down syndrome. The positive results might surprise some: 99% of parents say that they truly love their son or daughter with Down syndrome; 88% of brothers and sisters say that they are better people because of their sibling with Down syndrome; and people with Down syndrome, themselves, spoke up, too: 99% are happy with their lives, and 97% like who they are. My sister with Down syndrome certainly does. (I often wonder: How many Americans can say the same?)
But will this matter? …
To read the rest of Skotko’s opinion piece, please click here.
To see more of Skotko’s writing on Thriving, please browse the many blog posts he’s written as an advocate for people with Down syndrome.
The New York Times reports on the state of federal incentives for doctors and hospitals to adopt electronic medical records and notes the long-range vision of computerized patient data is what health care specialists call a “learning health system.” Children’s Isaac Kohane, MD, PhD, speaks to obstacles to such a national computer-enabled learning system.
The Boston Globe reports on the challenges parents are facing as they try and reduce the amounts of television their children watch. Children’s Michael Rich, MD, MPH, comments on how stressful it is for parents when they need to change their children’s television viewing habits.
MIT Technology Review reports on a new study by Children’s William Bosl, PhD, and Charles Nelson, PhD, which analyzed the electrical activity in infants’ brains to predict early on which could be at high risk of developing autism.
Children’s Kimberly Hall, MS, CCC-SLP, speaks with WCVB-TV Channel 5 about stuttering in a segment that highlights how the movie “The King’s Speech” is helping debunk some misconceptions about the diagnosis.
Claire McCarthy, MD, speaks with Reuters Health about a new report from the American Academy of Pediatrics that for the first time offers guidelines from the AAP on treating kids’ fevers with over-the-counter medications.
ModernMedicine.com reports on new research from Children’s Charles Berde, MD, PhD, and collaborators that finds patients given a new local anesthetic derived from algae experienced less postoperative pain and recovered about two days sooner than those given the commonly used local anesthetic.