Stories about: Heart Center

Chloe’s smile: Moving the needle on Williams syndrome research

Chloe is cared for at the Boston Children's Williams Syndrome Clinic.
“Because of your smile, you make life more beautiful.” ~ Thich Nhat Hanh

Her wide, warm smiles are generous. Even strangers can’t resist smiling back. “Chloe loves people and relationships,” says her mom, Johanna. “She can completely change a person’s demeanor with one of her incredible smiles.”

Now, Chloe’s powerful smile is bringing together supporters and scientists to advance research on Williams syndrome, the rare neurodevelopmental disorder she was born with 11 years ago.

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Experience Journal: From Venezuela for the chance to live

At five months old, Diana was diagnosed with tetralogy of Fallot with pulmonary atresia, a congenital heart defect (CHD) that couldn’t be treated in her home country of Venezuela. “Being told that your child has no chance of surviving is devastating,” says Diana’s mom, Alejandra. “We were given no hope.”

Research into where in the world Diana would receive the best treatment led her parents to the Heart Center at Boston Children’s Hospital.

Throughout Diana’s journey to health, Alejandra relied on support from her husband, her sisters and the community she found in Boston. “From the beginning, we felt that everyone — from social workers to physicians to staff at the Hale Family Center for Families — worked together so that my daughter could have a chance to live.”

With Diana now through surgery and thriving, Alejandra shares her family’s experience to offer hope and guidance to other families coping with pediatric heart disease.

The Experience Journals are collections of stories, videos and personal experiences from families about what it has been like to live with their children’s illnesses. This video is part of the Spanish Voices Journal made possible by support from Milagros para Niños

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Prenatal diagnosis sets James up for success

james-tetralogy-of-fallotI remember it like yesterday. Pregnant with my first child, I went to my 9-week scheduled ultrasound not really knowing what to expect. I heard a little baby’s heartbeat in my belly! I was blown away.

When you go for your 18-week ultrasound, make sure your baby’s heart is checked. A simple scan can change everything. ~ Elizabeth

At the 18-week scan, it appeared that the baby only had one kidney. The doctor seemed to think that everything else was normal, but he told me I had the option to make an appointment at Boston Children’s Hospital for a fetal echocardiogram. My husband had to work that day, so my mother came with me. I truly was not concerned.

Little did I know that my life was about to change forever, and all because of a simple scan that I almost didn’t receive.

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Experience Journal: Coping with a child’s congenital heart disease

At 16 months old, Avery was diagnosed with an atrial septal defect — a hole in the wall between the heart’s upper chambers that required open-heart surgery to repair. ​

Shock, fear and pride were just a few of the emotions Avery’s parents Jessica and Andrew experienced throughout their journey coping with their daughter’s congenital heart defect (CHD).

The couple found it helpful to talk through their questions and feelings with other parents of children with a CHD, as well as with Avery’s caregivers from the Heart Center at Boston Children’s Hospital. Now with two years of recovery behind them, Jessica and Andrew generously pay it forward by sharing their experience and offering guidance to other families coping with pediatric heart disease.

Avery's journey with congenital heart disease.

 

The Experience Journals are collections of stories, videos and personal experiences from families about what it has been like to live with their children’s illnesses. This video is part of the Heart Experience Journal, created by the Department of Psychiatry and the Heart Center.

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