Shortly before Logan Collins was born, a prenatal ultrasound suggested a possible problem with her heart. Her mother, Erika, went into labor the next day, two weeks shy of her due date. Logan was born at just 5 pounds, 5 ounces and had a weak, high-pitched cry that sounded like a cat meowing.
“When I became aware of her birth weight and heard her cry, I had a good idea something was going on, but I didn’t say anything at the time,” Erika says. She suspected Logan had the same disorder as one of her cousins. Chromosomal testing in the Division of Genetics at Boston Children’s Hospital confirmed it: Logan’s fifth chromosome had both a deletion of one piece and a duplication of another. She was diagnosed with Cri du Chat—a rare genetic disorder whose name is French for “cry of the cat.” …
How do you know if you’re making the right medical decision for your child?
Nine years ago, Rosamaria Rand and her family faced this difficult question. While pregnant, Rosamaria learned that her daughter, Alexa, had a severe heart defect known as hypoplastic left heart syndrome (HLHS), where half the heart fails to develop properly. Doctors told the Rands that most children born with HLHS go through a process known as single ventricle palliation or “SVP”— a series of three surgeries to reconstruct the heart so it can function with a single working ventricle. They also let the Rands know that only about 50 percent of patients treated this way survive to adulthood.
Alexa had her initial procedure in utero (before she was born) at Boston Children’s. At this time, her parents learned about an alternative treatment method to SVP that can help patients with HLHS. Under development at Boston Children’s, this relatively new approach held the promise of helping children born with HLHS avoid long-term complications and improve their overall health. …
On February 14, the Innovation Acceleration Program will celebrate Children’s Hospital Boston’s rich history of innovation at the hospital’s first Innovation Day. Of all the groundbreaking discoveries and procedures that have taken place within Children’s walls, few have had the impact of the surgery performed by Robert Gross, MD, one summer’s day in 1938.
“If you look at the history of cardiac surgery,” says Children’s Associate Anesthesiologist-in-Chief Mark Rockoff, MD, who also chairs the hospital’s Archives Program, “it essentially all started with Dr. Gross.”
Gross’s patient, 7-year-old Lorraine Sweeney, from Brighton, Mass., came to him with a diagnosis of patent ductus arteriosus, a congenital heart defect consisting of a persistent abnormal opening between the pulmonary artery and the aorta. In 1938, it was generally a death sentence—one that would likely end with Sweeney dying of congestive heart failure before adulthood. Accepted practice dictated that surgery was not a survivable option. Gross, the chief surgical resident at Children’s at the time, disagreed.
After two years of successful animal experiments, Gross was certain that the defect could be corrected in a human being “without undue danger.” He lobbied for the opportunity to test his theory, despite skepticism from his peers, and direct opposition from William Ladd, MD, Children’s surgeon-in-chief, and Gross’s superior.
Undaunted, Gross waited until Ladd boarded a ship bound for Europe. Then, with the blessing of Sweeney’s mother, he put his career on the line and performed a revolutionary surgery—tying off Sweeney’s patent ductus arteriosus, allowing normal flow of blood through her heart. “Dr. Gross told me that if I had died, he would never have worked again,” Sweeney recalls. “He would have ended up back on his family’s chicken farm.” …
Pierce Heilinger recently underwent a complex surgery at Children’s Hospital Boston that may have saved his life. The young patient’s story has resonated deeply with parents who use social media, and even though many of those people had never met the child or his family, that online support system was instrumental in bringing him to Boston.
Pierce has heterotaxy syndrome, a birth defect that may involve the heart and other organs. Normally the human body has organs that grow on both sides, like the lungs or kidneys, and others that develop on a specific side, like the stomach or liver. But with cases of heterotaxy one or more of those organs may be reversed, including the heart.
In researching her son’s condition, Pierce’s mother Jessamyn learned that despite being an extremely rare condition Children’s Hospital Boston has performed over 100 surgeries to correct heterotaxy syndrome in the past few years.
In her search she also came upon a group of internet-savvy parents—many who have children with heart defects— including several whose kids were treated at Children’s. Collectively these moms tapped into their individual social networks and through forums like Facebook, Twitter and blogs they were able to raise enough money and awareness around Pierce’s situation to bring him to Boston.
(Watch the following CNN coverage of Pierce’s journey to Children’s.)
Baby Pierce’s condition may be rare, but the strength and passion his mother showed in arranging his care is not. There are tens of thousands of parents whose children are battling illness, and like Jessamyn many are using social media to educate people about their conditions or support others facing similar situations. Individually these outlets represent a small portion of the Internet population, but together they have a powerful voice that can be heard by millions.
The movement that brought baby Pierce to Children’s is proof of their collective strength.
As the online experience becomes more personalized, this type of interactive communication will become more and more common. And for parents dealing with the stress of childhood illness that deeper connection to others who share their fears and frustrations can be very comforting. But like with all online medical information, these forums should be approached with a buyer beware mentality; health information is only as valuable as the source providing it. With so many medical sites and forums competing for digital readership, more than a few inaccurate pages have attracted followers.
Fortunately for parents interested in pediatric heart conditions, there’s The Heart Center at Children’s Hospital Boston’s Facebook page. Our page offers families a secure place to interact with each other and get plenty of factual information on pediatric heart health. It currently connects over 2,000 families and is monitored by a pediatric cardiology specialist who can direct people with specific treatment questions to the proper channels.
If information on heart health and treatment is important to you, or you are looking to connect with other families who have been touched by a pediatric heart condition, please join our page and help us grow the conversation online.