Author: Scott Howe

Giving blood: important in a crisis, important all year long

Following the tragedy in Boston on Marathon Monday, thousands of people asked, “what can I do to help?” For many, the answer was “give blood.”

In fact, the desire to donate in days after the marathon was so great that appointments at the Boston Children’s Blood Donor Center booked up quickly, and many eager donors were asked to schedule future appointments.

The generosity was truly remarkable and the donations very much needed. But it also spurred curiosity. More than once I heard someone ask, “How does the blood you donate go on to help others?”

The answer is a little more complex than you might expect,. For starters, donated blood can be used all at once, called whole blood, or separated into components which can go on to help people with different needs.

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A lifelong patient makes a long-term commitment to Boston Children’s

Labor Day Weekend, 1970.

Rhode Island State troopers escort an ambulance racing towards the Massachusetts border. There, Mass state troopers take over the escort and hurry the ambulance to Boston Children’s Hospital, where Dr. Donald Fyler is waiting. Upon arrival Fyler quickly determines that the vehicle’s most important passenger– a newborn baby – has a rare heart condition that demands complex surgery. Immediately.

The baby is rushed inside and a few hours later emerges from surgery with a repaired heart.

42 years later, Jim Skeffington is still very much a part of the hospital that saved him that summer day.

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For this heart patient, what goes around, comes around

Robin

When Robin Scott was a little girl, traveling back and forth to the hospital to be treated for her single ventricle heart defect, her mother, Susan, had a simple wish: “What I really wanted was to see an older child who had a heart defect … I wanted to see teenagers, adults … I wanted to see people who had a normal life.”

Funny how things work out. Today, Susan’s daughter is 30 years old and working at Boston Children’s Hospital—the same place she’s been receiving treatment since she was born. Robin, who recently transitioned to an analyst role in the Physicians’ Organization, previously worked in the Advanced Fetal Care Center (AFCC).  There, she was frequently asked to meet with fetal cardiac patients and their expectant parents, answering questions about her own experience and serving as a strong, healthy example of a congenital heart patient living a normal life.

Robin had volunteered at Boston Children’s as a teenager and had “always wanted to work at the hospital.” When a job opportunity came along in 2010, she took it. Strangely, Robin says that the job recruiters who helped place her at Boston Children’s did not know that she had been treated there, and her personal history had nothing to do with their hiring decision.

Today Robin is often in contact with doctors and nurses who care for heart patients, and they regularly ask for Robin’s help in answering questions from parents.

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Our patients’ stories: Treating Haven’s pulmonary atresia

Haven

When Molly Foley was first pregnant, she admits she knew very little about congenital heart defects, or how they could affect her unborn daughter, Haven. But, around 20 weeks into her pregnancy, Molly discovered that heart defects were very real—and very scary—when an ultrasound revealed that Haven had pulmonary atresia. Also known as “blue baby syndrome,” pulmonary atresia is a condition in which the heart’s pulmonary valve is abnormal and doesn’t open.

“It never occurs to most people that their baby could have a heart defect,” Molly says, noting that many parents are all-too aware of other potential birth defects like cleft lip/palate, Down syndrome and spina bifida. “It just doesn’t come across many people’s radar screen.”

And while children born with pulmonary atresia may be rare, there is a wide range of more commonly occurring heart conditions that can affect babies. In fact, when viewed as a whole, heart defects are the number one most common type of birth defect.

Following Haven’s diagnosis, Molly says that the staff at the Boston Children’s Hospital Heart Center “worked very hard to make me psychologically prepared for what was coming next.” Doctors told Molly that Haven needed a series of three surgeries—the first coming when Haven was just four days old. In addition, Haven needed to be placed on an ECMO (Extracorporeal Membrane Oxygenation), a life-supporting technology that replaces a critically ill child’s heart and lungs. “The ECMO was invasive,” Molly remembers. “We weren’t sure what to expect.”

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