Our patients are our heroes, our friends and our inspiration. Every day, we learn from the extraordinary people who make MassGeneral Hospital for Children their choice for family-centered care. Many patients and families come away with strong relationships forged during their time with us, and deeply touching stories of their patient-care journey.
These are their stories, in their own words.
Our patients and their families share strong bonds with their clinicians and care teams at MassGeneral Hospital for Children, and we hear every day how happy they are that they came to us for their care. We wanted to find a way to more broadly share these incredible stories of how MGHfC’s family-centered care made a difference in these children’s lives. We invite you to browse these patient stories below, and learn more about the amazing families who trusted us to truly listen to their needs while delivering the best possible pediatric care. And if you have a story of your own you’d like share, please click the "Share your story" button to let us know!
Indiana’s story: Heart-to-heart care helps baby thrive after PICU stay
After open heart surgery at 2.5 months old, Indiana Sakash recovered in the Pediatric Intensive Care Unit (PICU) at MGHfC. As the months passed, Indiana flourished from a tiny infant who struggled to breathe and put on weight to a smiley baby who loved to eat, play and giggle around the clock.
Ingrid’s story: A multidisciplinary dress rehearsal helps baby and family thrive after high-risk surgery
After discovering a mass on baby Ingrid’s neck during an ultrasound and learning that she would need surgery immediate after birth, the Ramos family connected with the Fetal Care Program at MGHfC. There, a team of providers crafted a plan for treatment before, during, and after delivery. Their response provided Ingrid with the complex care she needed. Now, she breathes freely and thrives as a healthy baby.
Beau’s story: A true partnership in care helps baby thrive after cleft lip and palate surgery
At Sarah Mannion’s 19-week ultrasound, doctors at MassGeneral Hospital for Children (MGHfC) discovered that her son, Beau, had a cleft lip and palate. Initially feeling lost and uncertain, the Mannions were welcomed into the Fetal Care Program and the Cleft and Craniofacial Center, where Beau learned to thrive after surgery and multidisciplinary care.
Emilio’s story: Finding hope through comprehensive, personalized care
At almost 3 years old, Emilio Such was diagnosed with craniopharyngioma and after a craniotomy, needed radiation to shrink what remained of the tumor. At the Francis H. Burr Proton Therapy Center at MGHfC, Emilio marched in with a smile his care team was determined to keep on his face whenever possible.
Dayanara’s story: A team-based approach leads to greater confidence for girl with Down syndrome
When Dayanara Benitez, 10, comes to MGHfC, the exam room becomes a dance hall when she shows off her moves. Dayanara, who has Down syndrome, and her care team discuss life at home and at school, and her confidence is proof that she is thriving.
Nicholas’s story: Food challenges take toddler from restrictive diet to food freedom
At 4 months old, Nicholas Weeks tried peanut butter and broke out in hives. Allergy tests showed he was also allergic to milk, eggs, mustard and tree nuts. After various food challenges at MGHfC's Food Allergy Center, Nicholas is no longer considered allergic to many foods and his family found food freedom.
Wes's story: A chilly start leads to a brighter outcome
At 39 weeks, Weston Joujoute's mother Kiera's placenta stopped working. He was not getting enough oxygen. Doctors delivered Wes via emergency C-section and started him on therapeutic hypothermia for three days. Now a curious, babbling toddler, Wes is meeting all his milestones.
Grayson’s story: Hurdle by hurdle, toddler reaches the finish line with family-centered care.
At her 20-week ultrasound, Ashley McAlpine and her husband, Garret, learned their son, Grayson, had a congenital diaphragmatic hernia (CDH). After surgery and a harrowing 13 days on life support, Grayson embodies what it means to reach the finish line no matter the obstacles.
Jesse's story: Seeing beyond disability helps teen thrive
For the first 12 years of his life, Jesse Simon lived with an undiagnosed genetic disorder that puzzled many doctors. After several tests, his parents were at a loss for an explanation for their son’s nonverbal behaviors, developmental delays and occasional outbursts. After some time, Jesse tested positive for Pitt Hopkins syndrome and has learned how to thrive in his loving community.
Shea's story: A preemie's testament to resiliency
When Shea Tufts was born premature at 27 weeks, the Neonatal care team did CPR for 12 nerve-wracking minutes to help her heart beat on its own. Now an energetic preschooler, Shea's rocky first few months paved the way for her to thrive.
Ethan's story: A partnership in healing
When Ethan Datsis, 17, smiles, everyone else follows suit. His parents, Ellen and Kurt, knew something wasn't right when Ethan, who has autism and is non-verbal, showed that he was in pain. A partnership with his care team and surgery with an uncertain outcome helped bring back the smile Ethan is known for.
Liam's story: Turning lemons into lemonade for IBD research
On Aug. 31, 2018, 9-year-old Liam Doherty organized his second annual lemonade stand to support the research of Jess Kaplan, MD, clinical director of the MassGeneral Hospital for Children Inflammatory Bowel Disease (IBD) Center.
Zach's story: Fewer food allergies means more precious childhood memories
On Christmas morning of 2017, the Leitao’s house filled with the delicious scent of holiday cookies. For Zach Leitao, 8, this was a special occasion – he was about to try his first Christmas cookie. After they cooled, he took a bite and tears of joy came down his face. In the past, Zach, who has severe food allergies, typically had his own special plate of sweets. Just a few days prior to his first bite, he was declared free of three serious food allergies.
Paul's story: Brain tumor patient leaves a handprint on the hearts of many in Pediatric Neurosurgery
Paul Murphy is a young man of few words and tremendous actions. After receiving an unexpected diagnosis at age 18, Murphy’s gratitude for his care team in Pediatric Neurosurgery at MassGeneral Hospital for Children is now set in concrete.
Sofia's story: Small, but mighty preschooler conquers her world amid rare diagnosis
Sofia is one of an estimated 500 children in the world diagnosed with Pitt Hopkins syndrome, a genetic disorder that affects development, speech and intellect. This little girl, although tiny in size, is proving she is capable of big things despite her rare diagnosis.
Claire’s story: Overcoming Cancer
Catch up with Claire who came to the Proton Therapy Center at MassGeneral Hospital for Children for treatment at age 20 months, and is now thriving in 8th grade!
Olivia's story: Finding inner strength and grace through a complex diagnosis
Perseverance and grace are qualities that people often learn through life’s experiences. For 17-year-old Olivia Renzi, those qualities are personal keystones that allow her to transform stumbling blocks into stepping stones.
Mihaly's story: Surgical intervention saves infant from complex intestinal disorder
When Mihaly Oge was born 5 weeks premature, her abdomen was swollen – a clear sign of internal pressure. During surgery, Mihaly was diagnosed with jejunal atresia and midgut volvulus and spent four months in the NICU to recover. Now that she is home, Mihaly is almost ready to learn how to eat by mouth.