by Childrens Hospital Boston staff on February 1, 2012
The cover of today’s Boston Globe features the beaming face of Alannah Shevenell, a 9 year-old who will be heading home to Maine this morning after a three-month stay at Children’s Hospital Boston.
For just under 100 days Alannah and her grandmother have been staying at Children’s while she received treatment for a rare and aggressive cancer that was compromising several of her internal organs. When all other treatments had failed, Heung Bae Kim, MD, director of Children’s Pediatric Transplant Center (PTC), suggested a multivisceral transplant that would remove Alannah’s tumor and replace the six organs that had been damaged by its presence.
Under Kim’s guidance surgeons from Children’s PTC performed the 14-hour procedure. Once Alannah’s tumor was successfully removed doctors took the donor organs, which came from one donor and were kept together as a single unit, and transplanted them into the young girl. Now, a few months later, Alannah is ready to head home, making Children’s PTC the first ever center in New England to successfully transplant six organs in a single procedure— a very impressive number in the field of multivisceral transplantation.
Watch this video from the Boston Globe on Alannah’s treatment:
A multivisceral transplant is one in which the small intestine and liver are replaced, along with one or more of the following organs: spleen, stomach, pancreas or colon. Multivisceral transplants are used to treat a variety of digestive conditions, with the most common being short bowel syndrome. However, the number of multivisceral transplants performed is significantly lower than procedures involving only one organ; and when you think about the organ transplantation process, it’s easy to understand why. Full story »
When you hear the word robot, which image comes to mind first?
Those of us raised on Star Wars and Buck Rogers are likely to identify with the first image, but physically speaking, the robots of today have more in common with your computer and microwave than a Hollywood android.
They may look less interesting than your favorite sci-fi film characters, but modern medical robots are still quite helpful. So much so that the Boston Globe recently ran a story about a pilot project that placed a medical robot created by VGo Communications in the home of the Tally family, whose 2 year-old son Aidan is recovering from surgery he received at Children’s Hospital Boston last month to treat his urinary reflux .
The VGo robot’s main function is videoconferencing, which connects the Ashland-based family to their doctors and nurses here in Boston. Operated by remote control from Children’s, the VGo robot lets medical professionals see and communicate with Aidan’s parents, take video and close-up photos of Aidan’s scars for medical review and figure out if the prescribed medication is doing its job.
And because videoconferencing appointments are easier to coordinate than hospital visits, the Tally family was able to check in with Aidan’s care team every three days, instead of waiting for their first post surgical appointment, scheduled for six weeks after his surgery. Full story »
by Childrens Hospital Boston staff on December 12, 2011
The Boston Sunday Globe recently ran a cover story about a Children’s Hospital Boston family being treated at our Gender Management Services Clinic (GeMS). It was an in-depth and well-written piece about a family raising a transgender teenager and her treatment at Children’s. The GeMS Clinic is the first major program in the United States to focus on gender identity disorder in children and adolescents, a population who are often victims of bullying and harassment and have the highest rate of suicide attempts in the world.
I highly recommend the Boston Globe article, as well as the following companion blog, in which the father of the family discusses why they chose to share their story with the world…
My wife Kelly and I have had a number of defining moments since our twin children came into our lives. Each has been special in it’s own way, but most of these moments have been things that all parents can relate to: birthdays, first days of school and teaching the kids to ride a bike. But our family has also seen our fair share of different experiences; experiences that have been both frightening and extraordinary. Even some things that seemed simple at first went on to have a level of complexity we never expected.
Since sharing our story, we’ve met so many special people that have helped Nicole and changed our family forever. When we met Dr. Norman Spack, at Children’s Gender Management Services Clinic (GeMS) it was the first time we felt hope that Nicole could one day achieve her dreams. During that first visit, he lifted a tremendous amount of fear and worry from our shoulders and the smile on Nicole’s face when she left his office will forever be imprinted in my memory. I am not ashamed to say that I had doubts at first, but in one visit Dr. Spack erased them and set my family on a wonderful journey. Full story »
Born in Baghdad in 2002 without access to advanced medical care, Maryam Idan stood little chance of receiving anything more than the most basic treatment for her sickle cell disease (SCD). By the time Maryam was a baby, her parents, Basim and Janin Al-Zoubaidi, had already lost three of their children to the blood disorder, so they knew the condition’s telltale signs. “When she started showing the same symptoms as her siblings, we immediately thought the worst,” says her father. “We knew there was treatment in America, but we had no idea if we would have the means to get there.”
An inherited disease, SCD causes a child’s red blood cells to malform and become stiff, taking on the shape of a sickle, like the letter C. These abnormally shaped blood cells can stick together and interrupt healthy blood flow throughout the body. This can cause a host of problems that can affect nearly every major organ, but it affects every patient differently. “Some kids don’t have pain or complications until they’re teens, while others suffer strokes and extreme pain and need blood transfusions when they are very young,” says Leslie Lehmann MD, director of the Stem Cell Transplant Program at Dana-Farber/Children’s Hospital Cancer Center (DFCHCC).
Like Maryam, most kids with SCD experience breathlessness, delayed growth, extreme fatigue and pain in their bones from the time they’re young. Kids with SCD also have weaker immune systems, making them susceptible to infections, and they’re at a greater risk for strokes, blindness and fatal iron-overload—another dangerous blood complication. In developed nations, where symptoms can be treated with medication, patients often still only survive until their late 40s. For patients like Maryam in developing countries, even the most basic treatment for these symptoms isn’t usually available, and death at a young age is very common.
The only cure for SCD is a stem cell transplant when the patient is young, similar to a treatment that someone with cancer would undergo. It involves the complete destruction of the immune system (as well as the sickle cells) through chemotherapy, then rebuilding the person’s immune system using healthy stem cells from a matched donor. Full story »
Imagine for a moment that it’s 2001, and you’re Jennifer Miller. You’re pregnant with your second baby, and an ultrasound shows that his heart isn’t developing normally: In fact, the left side of his heart has a problem so significant it will stop developing normally from that point on. Your unborn baby has a severe blockage of the aortic valve, known as stenosis, which will lead to a rare and potentially fatal condition called hypoplastic left heart syndrome (HLHS) at birth.
Now imagine that you’re Jack Miller. As you float in the quiet darkness of the womb, your heart is the size of a grape and that troublesome valve that won’t deliver blood from the left ventricle of your body is only as big as the head of a ballpoint pen.
What happened next put the Millers on the front page of the New York Times and in TIME magazine. Full story »
ABC World News recently ran a story featuring Children’s Hospital Boston patient Caleb Seymour, an 8-year-old football player who tore his anterior cruciate ligament (ACL) on the field. Unfortunately, Caleb is just one of many young athletes facing this type of knee injury. Recent data shows ACL tears are rising rapidly among young people, and their long-term effects can be substantial. Kids who suffer serious ACL damage can have life-long problems with leg mobility, uneven leg growth or arthritis.
To help Caleb avoid these problems and get back on the field, Mininder Kocher, MD, MPH, associate director of Children’s Division of Sports Medicine, has been working with Caleb and his family to get the young man back in playing shape. He’s also been teaching them stretching exercises and other tips that will help him avoid similar injuries in the future.
And while rehab is tough work, Caleb gets inspiration from a another New England football player who also suffered an ACL tear: New England Patriots quarterback Tom Brady.
The Packards gather around the boulder in their backyard to pose for the picture. Katie passes her bright pink crutches to her mother, and although she needs them to get many places in her life—from school to hip-hop dance class, she’s able to lean against this rock without them.
The photos go well, of course, because the Packard family—mom Cara, dad Brian, brothers Dan and Kevin and sister Laura—is so tightly knit. They’ve come together in ways small and large to help Katie navigate life with spina bifida, a complex birth defect that affects the development of a child’s spinal cord, spine and brain.
But once the photo shoot is over, the rest of the family scatters across the backyard while Katie is still leaning.
“Mom,” she calls, “can you hand me my crutches?”
There she is, a 12-year-old girl, balanced precariously on the edge of the rock, stuck between childhood and adolescence, independence and dependence—between the desire for a regular life and the reality that there are simply things her body can’t do. Full story »
by Childrens Hospital Boston staff on September 23, 2011
by Brian Skotko,physician in Children’s Hospital Boston Down Syndrome Program
Brian Skotko, MD, MPP
In mere months, pregnant American women might be able to learn if their fetuses have Down syndrome with a simple blood test. The test will be perfectly safe, eliminating the small, but real, chance of miscarriage that comes with our current diagnostic options. If these tests do become a routine part of obstetric care, thousands of expectant parents will be receiving a phone call from their healthcare provider each year with this message: your fetus has Down syndrome.
That will be a panicked moment, according to women studied in previous research. But, what should healthcare professionals say about Down syndrome? What does it really mean to have Down syndrome? Six years ago, Sue Levine, Dr. Rick Goldstein, and I set out to find the answer to that question. Rather than let Rahm Emmanuel or GQ Magazine have the final word on what life is like with Down syndrome, we spoke to the people who truly understand. Full story »
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The cover of today’s Boston Globe features the beaming face of Alannah Shevenell, a 9 year-old who will be heading home to Maine this morning after a three-month stay at Children’s Hospital Boston.
