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Patient Stories

Debra and Natalie's Story

Boston Children's Hospital, Deb and Natalie

Debra’s 14-year-old daughter, Natalie, had been experiencing abnormal pain. Though the pain lasted for months, one particular instance prompted Debra to take Natalie to the emergency room. After several tests were conducted, she was diagnosed with vulvar varicose veins and discharged, without much guidance on next steps. At a follow-up appointment with a local OBGYN, Debra was told by a treating physician that Natalie would need to wear “special underwear” for her newly diagnosed condition. “She basically just left me with ‘There’s nothing you can do with it. Come see me again in a year.’ It was just ridiculous.”

Grand Rounds connected Debra and Natalie with Dr. Steve Fishman, Co-Director of the Vascular Anomalies Center at Boston Children’s Hospital and Vice-Chair of Surgery, Clinical Operations.

Dr. Fishman is a leading expert on vascular conditions like Natalie’s. After carefully reviewing her medical history and specific questions, he provided a thorough description of what Natalie’s diagnosis actually meant. He also provided new treatment recommendations to consider that he believed would resolve her constant pain and allow her to live a normal, healthy life.

Dr. Fishman explains, “When it comes to rare or complex medical conditions, there is often great value for a patient, and often for their physicians, in having a fresh set of eyes look at their challenge. I deal with rare and complex problems because that’s what I have trained to do. In this particular case, the patient’s problem is very rare, but one which I see frequently. Many of my patients haven’t received the full information they need to take their next steps.”

Debra and Natalie were thrilled with the guidance they received in their expert opinion. “Dr. Fishman’s advice gave us the perfect amount of information that we could both understand, and I was able to use that opinion in my follow-up appointments.”

Following Dr. Fishman’s guidance to see an expert in vascular anomalies in person, Debra decided to schedule an office visit with a local, in-network expert. Grand Rounds wasted no time in connecting Debra and Natalie with Dr. Sally Mitchell, Director of Vascular Anomalies Center at Johns Hopkins University. Based on their in-person visit, Dr. Mitchell and the Johns Hopkins team decided to move forward with the surgical procedures recommended by Dr. Fishman. Today, Natalie is pain free and living a healthy, normal life without the persistent vaginal pain.

Click here to learn more about the Boston Children's Online Second Opinion program or to request a second opinion. 

Cameron's Story

Boston Children's Hospital, Cameron, TeleConnectOne day in December, Cameron Shearing was rushed to South Shore Hospital after his airway became blocked by a chocolate-covered pretzel. Pretzel is one of the worst foods to have lodged in your throat because the tiny pieces can block multiple small airways, and the salt topping can very quickly irritate the throat and lungs, causing dangerous inflammation

Unable to immediately transfer Cameron to Boston Children’s Hospital due to the snowstorm, his physician used the TeleConnect video-conferencing platform that connects Boston Children’s to community hospitals to consult with the Boston Children’s Hospital subspecialists on duty. The goal was to fine-tune ventilator settings so as to optimize gas exchange while avoiding overexpansion and pneumothorax of the right lung, which was the patient’s sole functioning lung at this point.

Dr. Galina Lipton, a Boston Children's Hospital Emergency Medicine doctor was patched through to Critical Care physician, Dr. Melody Duvall, and the two doctors video-conferenced, discussing how to fine-tune Cameron’s ventilator settings without overinflating his lungs. “It was almost like having her in the room with us. She could see the monitors, review changes in his condition and consult with all of the providers in the room,” Lipton says. “Unlike a phone conference, I didn’t need to act as a middle man and relay information to other members of the treatment team. Things were happening in real time.”

Read more about Cameron's story here: Technology, teamwork and telemedicine to the rescue, Challenging case: Aspiration of a pretzel

Sara and Marianna's Story

Boston CHildren's Hospital, Sarah and Marianna

Marianna’s 9 year old daughter, Sara, has always been “small” for her age. After physicians noted Sara was low on the growth curve, Marianna wanted to know if any underlying health issues may be causing her daughter’s smaller size.

Marianna took Sara to see a pediatric endocrinologist and had a barrage of tests completed, including blood tests and bone age X-rays. Though early tests were inconclusive, Sara’s physician diagnosed her with growth hormone insufficiency and recommended she begin taking growth hormones.

He also advised she get an MRI of her pituitary gland to confirm no cysts were present, which may have been inhibiting her growth and hormone function.

Marianna wanted to be sure Sara was getting the best care possible, but didn’t want to subject her young daughter to any additional unnecessary testing. Fortunately, just weeks after Marianna received Sara’s diagnosis, she saw an article in her employer’s benefits magazine stating she had access to Grand Rounds’ network of expert physicians and could get a second opinion on Sara’s diagnosis and treatment plan.

Grand Rounds connected Marianna with Dr. Diane Stafford, Assistant Professor of Pediatrics at Harvard Medical School and Boston Children’s Hospital, and one of the country’s leading experts on pediatric growth disorders.

“I was so impressed with how clear and precise Dr. Stafford’s opinion was. She didn’t use any difficult medical jargon and it was easy to understand her treatment recommendations. She answered all of my questions regarding Sara’s health in detail, and even provided a summary I could use for next steps,” Marianna says.

Dr. Stafford explained that while Sara is indeed small,  her testing shows that she is healthy and suggested that Marianna not follow through with growth hormone therapy and that an additional MRI of her pituitary gland was likely unnecessary.

“I’m really grateful we had access to Grand Rounds when we did. My husband and I agreed that if we ever needed a second opinion about our health or the health of our daughters, we are happy to know we can access such a reliable service to get medical guidance from leading experts.”

Click here to learn more about the Boston Children's Online Second Opinion program or to request a second opinion. 

Carson advocates to expand insurance coverage for Telehealth

Boston Children's Hospital, Carson, Telemedicine

Carson was diagnosed with orofacial granulomatosis, a rare chronic inflammatory disorder that affects the lips and the area around mouth, and Crohn’s disease. He works hard to raise money for the hospital and educate the public about telemedicine, something important to him since he lives a few hours away from the hospital. “For example, if someone doesn’t go to a doctor’s appointment because it’s too long of a drive, they could use telemedicine,” Carson said “They could still see that doctor, [and] it will improve the quality of care for the community and the person.”

Carson worked with Boston Children's Office of Government Relations to promote a telemedicine bill (H.267) in the state legislature. He even testified on Beacon Hill for the legislation, which would expand insurance coverage for telemedicine. Carson said his own experience as a patient helped drive him to become involved with raising awareness about health issues and working to make sure everyone has access to telemedicine. Carson aspires to be President someday.

Read more about Carson's story here: This 11-year-old is working to expand telemedicine coverage in MassachusettsCarson Domey for president!Virtual visits: How telemedicine can improve health care

Sam and Brenda's Story

Boston Children's Hospital, Sam and Brenda

Brenda’s 10-year-old son, Sam, has a lifelong history of urinary incontinence, which began at the age of three. He was initially diagnosed with an overactive bladder, which resulted in trying many different therapies. From behavioral interventions to attention deficit disorder (ADD) medications and dietary changes, nothing seemed to help. After years of no progress, Sam finally had an MRI completed. The images showed that he had a large thoracic syrinx (a fluid-filled cyst) in his spinal cord, for which Sam and Brenda began seeing a neurosurgeon. Although the cyst appeared stable after close monitoring, the neurosurgeon believed it was the root cause of Sam’s urinary difficulties. He explained that while he had never had a case with a thoracic syrinx, he had treated other syrinxes. He recommended that Sam have a thoracic shunt placed to drain the cyst and Sam’s urologist also increased his medication dosages to further combat the incontinence.

Brenda felt uneasy with the recommendations after doing her own research and learning that this type of procedure was considered very risky and highly invasive. She mentioned the surgery to Sam’s pediatric physician and to a friend of the family, who was a surgeon. Both physicians echoed her concerns and recommended she pursue a second opinion from an expert.

Brenda decided to seek an opinion from a specialist from Boston Children’s Hospital in partnership with Grand Rounds. Grand Rounds got to work right away collecting Sam’s medical records and closely examining his medical history.

Within days, Brenda had an expert opinion from Dr. Mark Proctor, Vice Chair of Neurosurgery at Boston Children’s Hospital. The news was game-changing. Dr. Proctor explained that not only was the recommended surgery not appropriate for Sam’s condition, but it could actually be dangerous. The surgery is extremely rare and because of its highly technical nature, it requires a considerable amount of expertise to be successful. The procedure puts the spinal cord in a precarious situation as one must cut into the spinal cord in order to place the shunt. In Dr. Proctor’s career at Boston Children’s Hospital where these types of anomalies are considered to be in the best hands, he had only seen the procedure done a handful of times.

Dr. Proctor pointed out that in the original imaging, Sam’s treating physicians failed to consider one key detail: Sam had a tethered spinal cord, a common and non-threatening condition often associated with the incontinence issues Sam was experiencing.

Brenda explains, “In his written opinion, I could tell he was being very polite, but he was clearly unsettled by the original treatment recommendations. He urged us to have a few other minor tests completed to be certain and to confirm his new recommendations for Sam’s care moving forward. He invited us to come to Boston Children’s Hospital to have Sam seen in person. We jumped at the opportunity.”

Brenda and Sam were able to get an appointment right away with Dr. Proctor and his team, where they ran the additional tests and confirmed that not only was the thoracic syrinx not a threat to Sam, but that the tethered spinal cord was the more likely culprit behind Sam’s incontinence. One of the specialists reported that even if Sam had not already had an MRI with a visible tethered spinal cord, he would have suspected that a tethered spinal cord was present and would have ordered an MRI to be completed.

“We were scheduled for a non-invasive surgery right away and were very well cared for. The team was so knowledgeable and helpful, and Sam was able to recover very quickly. Today, he’s feeling wonderful and his incontinence problems are completely gone,” Brenda explains.

But, that wasn’t the last surprise that Brenda and Sam had in store. While visiting the team at Boston Children’s Hospital, they determined that the medication Sam had been prescribed by his former physician was also causing another complication. Due to the high dosage he was taking, each time Sam urinated he wasn’t able to completely empty his bladder. If Sam had continued on the medication path he was on, he would be at high risk for a urinary tract infection in the future.

“We literally went from having an extremely risky surgery as our only option to finally learning something that should have been caught previously, and to taking him off a high dosage of medication he shouldn’t have been on in the first place,” Brenda says.

“We’re so grateful that everything is fine today. It was an incredibly stressful experience, and having the Grand Rounds team there helping us to manage our care was really helpful. I didn’t have to push for anything--my care coordinator was making sure I was always updated and knew what was going on. Even my pediatrician commented that Grand Rounds’ technology was really cool.”

Click here to learn more about the Boston Children's Online Second Opinion program or to request a second opinion. 

Read more about Sam's story on Boston Children's Hospital's Pediatric Health Blog