by Childrens Hospital Boston staff on May 17, 2012
By Kathryn Michalski
Peter
When my son Peter and I go out, it’s not unusual for people to fawn over him a bit.
“What a happy kid.” “He’s so smart.“ “It makes me smile when I see him,” we often hear. As a mom raising a child with as many health issues as Peter has faced, these comments brighten my day.
Peter was born with anarteriovenous malformation (AVM) in his liver, meaning his veins and arteries weren’t connected properly. When he was just seven months old, the AVM completely disrupted the blood flow to his liver and small intestine, causing multiple holes in his small intestine. He became gravely ill after that. At our local hospital, Peter had one surgery to remove the AVM and three more to salvage what was left of his intestines.
When it was all over, Peter had four ostomies (a surgical opening made in the skin as a way for waste products to leave the body) and a gastrostomy (a surgical opening into the stomach, where a feeding device can be inserted). He couldn’t digest food properly, so he had to receive all his nutrients intravenously (IV), through a medication called total parenteral nutrition (TPN).
Having a child on TPN is a lifestyle, for both patient and parents. It requires refrigerating IV bags and medications, and storing huge amounts of tubing, caps, alcohol preps, pumps, dressing change kits, and other supplies. There is a daily ritual of preparing the medicine and hooking it up, and because TPN requires a permanent central line for IV access, there is always a risk of infection that needs to be closely monitored. Full story »
The Boston Globe recently ran a story about a young Boston Children’s Hospital patient who came to the hospital from Palestine. Coordinating his care was a combined effort of many people, crossing geological and political borders.
Yahya at Boston Children's
When Yahya Ahmad Masalma was born in a small village in Palestine, Israeli doctors diagnosed him with posterior urethral valves (PUV), a congenital and chronic condition that compromises the kidneys and urological system. In Yahya’s case, his kidneys and bladder were unable to properly function, causing serious problems, so doctors in Jerusalem began performing regular dialysis—a process that takes the blood out of the body, filters it through a machine and puts back into the body.
But a person—especially a child—can only undergo dialysis for so long before the body begins to revolt. After five years, Yahya’s blood vessels were damaged and failing and he would soon be unable to undergo any more of the life-sustaining treatment.
Without dialysis, Yahya’s condition would worsen quickly, and the only way he could survive was to get a kidney transplant.
Michael Agus, MD,director of Medicine Critical Care Program Boston Children’s Hospital had heard about Yahya’s case through his Israeli colleagues, and made William Harmon, MD, chief of Boston Children’s Division of Nephrology, aware of the situation. Although the Israeli Hospital has performed kidney transplants in small children before, Yahya had very low blood pressure and they felt that it would not be safe to do so for him. The Israeli physicians could not find a transplant program that was willing to accept Yahya. Full story »
Sarah Pastore was born with bright blue eyes, a beautiful smile and a single, failing kidney. She fared well in her first few months, but by the time she approached her first birthday her prognosis was clear: without a kidney transplant the little girl from North Reading, Mass., was sure to die.
Her parents, Nancy and Robert, were screened to see if they could be potential donors, but neither was a good match. Because Sarah’s brother John Paul is under 18, he wasn’t eligible to donate. It looked like the next stop was the organ donor list.
But before her name could be submitted to the list, her uncle, Anthony Pastore, was tested to see if he and his niece would be compatible for transplant. As luck would have it, they were, and the 32-year-old Woburn man quickly offered one of his kidneys to save her.
With the live donor identified, Sarah was well on her way to better health. But how exactly do doctors fit an adult kidney in a toddler’s body? Full story »
Taylor West was suffering from terrible headaches, but they came and went so fast neither she nor her parents were too worried at first. But as the headaches got worse, doctors became worried. A CT scan revealed a large tumor in Taylor’s brain, and less than 10 days later she was undergoing surgery at Boston Children’s Hospital and waiting to find out if the tumor was cancerous.
When Taylor West of Tecumseh, Oklahoma, started complaining of headaches, her mother Lori’s first thought was that she was trying to get out of school: The headaches were worst early in the morning, but by noon Taylor would be up and running around.
“People thought the headaches were just because of stress, but I knew they weren’t,” says Taylor, age 10. “It felt kind of like an electric shock.”
When Taylor began getting sick to her stomach and throwing up, Lori thought perhaps she had a flu bug that was going around. But as weeks and then months went by, she became concerned, and so did the doctors. A neurologist sent Taylor for a head CT scan.
“That evening we got a call saying, ‘get her to the hospital tonight,’” Lori said. Full story »
by Childrens Hospital Boston staff on March 29, 2012
The following blog was written by a doctor whose son was recently treated at Boston Children’s Hospital for appendicitis. In it she discusses what it was like to experience a medical emergency and describes the level of care he received at Children’s. It originally appeared on her personal blog, Notes of an Anesthesioboist,and was mentioned on Paul Levy’s blog, Not Running a Hospital.
But this is more than just a nice story; it’s a reminder that the true heart of Boston Children’s is our patients and their families. Do you have a Boston Children’s story you’d like to share with your fellow Boston Children’s parents? If so, please let us know in the comments section bellow or on our Facebook page.
My son had been having episodes of pain right around his belly button for several weeks. Between these bouts of mild abdominal pain he was completely fine—healthy appetite, active, happy. But I had a feeling something was brewing. The disease finally declared itself: several nights ago his belly pain was severe and unremitting. He was in tears. He couldn’t sleep. The pain had shifted a little bit to the right. Sometimes walking made it worse, and when I examined his abdomen, pressing on the area and abruptly letting go increased the pain. I suspected appendicitis, so we headed to our local hospital.
“Where would you rate your pain on a scale of 1 to 10?” asked the Emergency Department (ED) nurse once we arrived.
“Um…6.5,” my son answered. His dad and I had to chuckle. This ultra-mathematically-precise answer was so in keeping with his personality.
Some community hospitals evaluate and treat children for appendicitis, but many refer patients directly to Boston Children’s Hospital, which is what ours did. When I heard we were going to Children’s I was glad; it’s a terrific hospital, with complex, well-oiled systems that include quality health care delivery, and family and child supports.
My son and I walked into Children’s just after midnight. It should have felt like home turf in a way—I had learned to anesthetize children here—but that night it felt utterly foreign. Full story »
by Childrens Hospital Boston staff on March 15, 2012
In the following blog, a young woman shares what it’s like to live with endometriosis, a painful condition that occurs when tissue similar to the inside lining of the uterus is found outside of its normal location.
I remember when I first started having pain. I was 14 years old and told my mom about a constant pain in my side. She brushed off my comment and gave me some Advil thinking it would help. After a while the pain just never subsided so I told her I needed to see the doctor. After a number of tests, hospitalizations, surgery, and a year of searching for “what was wrong”, it was confirmed that I had endometriosis.
Even though the process of figuring out “what was wrong” had concluded, my pain was still present. It did subside a bit after going on birth control pills and other pain alleviating remedies, but every now and then there would be moments of unbearable pain. My parents and friends would comment and say things to me like “You must be feeling so much better, or “I’m so glad you’re in less pain, the surgery and medicine really must have been what you needed”. Little did they know that endo is not like a cold that goes away after a few days. Full story »
Alexa Horwitz and Eliot Greene have a lot in common. They’re both high school honor roll students. Eliot is his class president at Belmont Hill School, while Alexa is editor-in-chief of the school newspaper at Buckingham Browne & Nichols. Both are varsity athletes, even participating in similar sports—tennis for Alexa and squash for Eliot. They’re friendly, engaging and quick with a smile. And they’ve both undergone multiple open-heart surgeries at Children’s Hospital Boston, making them perfect candidates to pilot the Heart2Heart at Children’s Teen Mentoring Program.
The program—currently available in Cardiology—matches high school or college students who were born with heart defects with patients currently being treated at Children’s. It’s the first program of its kind involving face-to-face mentoring with both patients and parents. “The questions they have are the same questions we had,” says Alexa. “It’s easier to talk to someone who knows firsthand what you’re going through.” Full story »
When Jeffrey Cameron was born in 1996, he seemed to be a perfectly healthy baby. Then, at just ten days old, baby Jeffrey went into acute respiratory distress and was taken by air ambulance to a local children’s hospital where he was diagnosed with Hypoplastic Left Heart Syndrome (HLHS), meaning the left side of his heart was underdeveloped and couldn’t pump blood properly.
After a dizzying round of meetings with doctors, Jeffrey’s parents, Lenore and Tim, were presented with a set of difficult choices: Jeffrey could have a heart transplant, undergo a series of three open heart surgeries, or they could let him die at home.
“The doctors outlined our choices for us, and their exact words were, ‘You have three options and they’re all not very good,’” Lenore says. “We were told that transplant hearts for infants were extremely hard to come by and the that the 3-staged surgery was experimental. They said even if Jeffrey lived he might not have any real quality of life after all the surgeries.”
Based on the information presented to them by doctors, Lenore and her husband were under the impression that there was little hope for Jeffrey. After agonizing over the decision, the Cameron’s brought Jeffrey home with them so the family could enjoy what little time they had together in the comfort of their own house. It was a devastating time for them, but as the days wore on and Jeffrey continued to fight, friends and family asked the grieving couple to consider getting a second opinion. They began researching other treatment centers and learned that Children’s Hospital Boston had been successfully treating HLHS since the early 1980s, and patients with the condition were routinely sent there from all over the world. Full story »
Do you have a Children's Hospital Boston story you'd like heard? By sharing your Children's story you can be a great source of inspiration and encouragement to families who are going through similar situations. And it’s a great way to find support by connecting with others. Share your story today »
“That evening we got a call saying, ‘get her to the hospital tonight,’” Lori said. 
My son had been having episodes of pain right around his belly button for several weeks. Between these bouts of mild abdominal pain he was completely fine—healthy appetite, active, happy. But I had a feeling something was brewing. The disease finally declared itself: several nights ago his belly pain was severe and unremitting. He was in tears. He couldn’t sleep. The pain had shifted a little bit to the right. Sometimes walking made it worse, and when I examined his abdomen, pressing on the area and abruptly letting go increased the pain. I suspected appendicitis, so we headed to our local hospital.
I remember when I first started having pain. I was 14 years old and told my mom about a constant pain in my side. She brushed off my comment and gave me some Advil thinking it would help. After a while the pain just never subsided so I told her I needed to see the doctor. After a number of tests, hospitalizations, surgery, and a year of searching for “what was wrong”, it was confirmed that I had 
Alexa Horwitz and Eliot Greene have a lot in common. They’re both high school honor roll students. Eliot is his class president at Belmont Hill School, while Alexa is editor-in-chief of the school newspaper at Buckingham Browne & Nichols. Both are varsity athletes, even participating in similar sports—tennis for Alexa and squash for Eliot. They’re friendly, engaging and quick with a smile. And they’ve both undergone multiple open-heart surgeries at Children’s Hospital Boston, making them perfect candidates to pilot the Heart2Heart at Children’s Teen Mentoring Program.
