10370420_799767777399_4866938761443528178_nThis story is written by Kerri Vatour and was originally published on the Children’s Hospital Association’s blog.

The first time Boston Children’s Hospital saved my son’s life, he was 21 hours old.

It wasn’t a surprise—Joey had been diagnosed in utero with both a ventricular septal defect (VSD), a hole between the right and left sides of his heart, and a duodenal stenosis, where a portion of the intestine is so constricted that very little can pass through, by doctors in the Advanced Fetal Care Center.

Upon birth, it was obvious that the latter issue would take precedence, and Dr. Smithers worked his magic in almost six hours. The second time came less than a month later, when his VSD and another heart defect—an atrial septal defect (ASD), or a hole in the upper part of his heart—were repaired by the amazing Frank Pigula, MD. Full story »

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Michael RichMichael Rich, MD, MPH, is Boston Children’s Hospital’s media expert and director of Boston Children’s Center on Media and Child Health. (Visit their newly redesigned website here.) Send him a media-related parenting question via cmch@childrens.harvard.edu and follow him on Twitter @CMCH_Boston.

Q: I have two daughters, 8 and 6, who will be returning to school this September. I tend to be fairly liberal with the rules around media use during the summer, but this year both girls will be receiving iPads from their schools to use for classwork and homework. I’m concerned about getting the girls back into a balanced routine where they can focus on their schoolwork and assignments without being distracted by media, but with the addition of iPads and my eight-year-old needing to use the internet for homework, I’m not sure how to set boundaries. Any advice you can offer will be truly appreciated. Thanks!

~ Feeling the Back-to-School Blues, Dedham, MA

A: Dear Blues,

The introduction of tablets and smartphones into education has blurred the concept of screen time and screen time limits as a strategy for helping kids thrive in a digital environment. Using these tech tools both in the classroom and at home can help strengthen your child’s learning, but your guidance can help them use these tools optimally while balancing a rich and diverse menu of experiences. Full story »

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Our patients’ stories: Yousef’s Vein of Galen surgery

by Kipaya Kapiga on August 14, 2014

Yousef-1Yousef Alrkhayes was just two days old when a doctor burst into his mother’s, Khadjad’s, hospital room with unsettling news. “[He] came into my room and said that Yousef has high pressure in his heart and they didn’t know why,” she recalls. After you are discharged, the doctor continued, don’t even go home—go straight to the main hospital.

In the four days it took Khadjah to recover enough to move with her son, Yousef made little progress. His heart was still under stress and no one could say why. As their doctor sent them on their way, he begged them to ask for an echocardiogram at the hospital.

Khadjah could tell from the sound of his voice that he was worried. Full story »

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A patient and doctor team come full circle

by Guest Blogger on August 13, 2014

By Irene Sege

Kate-1Kate Franklin was just three and a half years old in August 2000 when her mother Emily brought her to the Boston Children’s Hospital emergency room, because she was bruising easily and couldn’t seem to shake a strep throat. Loren Walensky, MD, PhD, had just started his fellowship in pediatric hematology/oncology the month before, and that night Kate Franklin became one of the first patients he diagnosed with cancer. When Walensky told Emily Franklin that her daughter had leukemia, the mother placed her hands on the doctor’s shoulders, and, in a moment that Walensky says he will never forget, she said, “I will see you at her wedding.” Full story »

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Helping Liberia

by Tripp Underwood on August 12, 2014

LiberiaThe West African nation of Liberia is currently dealing with deadliest outbreak of the Ebloa virus that the world has ever seen. With hundreds dead and thousands more impacted, Liberia and its neighboring countries are at the center of a serious health crisis that is proving extremely difficult to control.

The images coming out of the area are troubling for everyone to see, but especially so for Michelle Niescierenko, MD. As director of Boston Children’s Hospital’s Global Health Program and the Academic Collaborative to Support Medical Education in Liberia, Niescierenko has spent years working with Liberian health care workers to strengthen the country’s medical education programs. Knowing her friends and colleagues in the area are now working frantically to contain the deadly disease, often without proper equipment and training, Niesciernko finds herself asking what many of us are thinking: “How can I help?” Full story »

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When your child is the patient: A nurse’s perspective

by Guest Blogger on August 11, 2014

Meaghan O’Keeffe, RN, BSN, is a mother, writer and nurse. She worked at Boston Children’s Hospital for nearly a decade, in both the Cardiac Intensive Care Unit and the Pre-op Clinic.  She is a regular contributor to Thriving.

Meaghan_OKeeffe_1I have always prided my nursing style as being deeply rooted in compassion. I put myself in the shoes of the families that walk through the rotating doors of Boston Children’s Hospital and acted accordingly as their nurse.

But now, after a brief health scare with my oldest child, I better understand that truly identifying with the parents of sick children is much harder than I thought. It’s difficult to really appreciate how crushing it can feel.

I think I get it now. At least a little more than I did before. And while my Sophie’s recent health issue was only a brief scare that eventually turned out fine, the whole experience gave me a better understanding of what “worried sick” truly means. Full story »

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The Importance of Patient Advocacy and Family Care

by Guest Blogger on August 7, 2014

By Kerry Sheeran, author of The Marathon, a novel based on the true, emotional journey of a mother and father forced to face their daughter’s life-threatening medical crisis. 

KerrySheeran_1Having held my daughter Emma’s hand through eight major surgeries, I consider myself well-versed in what it means to be a patient advocate. All parents are advocates for their children to a degree. From trying to feed them the right foods to connecting with their teachers, helping kids find their way in the world requires a lot of guidance and support from mom and dad.

But when your child has a medical crisis, advocacy takes on a whole new meaning. You become the “voice” of the sick child, speaking for them, through your own lips. Patient advocacy isn’t something that’s necessarily innate—it’s a skill that is developed over time. My husband and I learned this first-hand (with the help of a handful of Neonatal Intensive Care Unit (NICU) nurses at Boston Children’s Hospital.) Full story »

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Reliving TEDxLongwood

by Tripp Underwood on August 4, 2014

The Longwood medical area (the section of Boston that’s home to Boston Children’s Hospital and many other renowned medical centers) was recently the site of an exciting speaker series called “TEDxLongwood”—an independently organized event that brought people in the Longwood area together to share a TED-like experience.

Two of the day’s presenters had personal ties to Boston Children’s, each with a unique and moving story, which we wanted to share with Thriving readers.

Elaine

Elaine C. Meyer, PhD, RN, is a staff psychologist at Boston Children’s and director of the hospital’s Institute for Professionalism & Ethical Practice. In the following talk, Meyer recalls personal experiences—both from her times as a doctor and a patient—to remind listeners that sometimes being supportive and emotionally available to a patient and her family is the most important care a person can provide.

Jimmy

Jimmy Zankel is a director of The Big Apple Circus, the circus troupe that trains the men and women who staff Boston Children’s Clown Care Unit. In the following talk, Zankel explains how specialized training, carefully coordinated communication with the medical team and a pair of oversized underwear played a crucial role in one child’s treatment.

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