Stories about: Our patients’ stories

Palliative care: Not just end of life care

Hillary and EsmeMy daughter Esmé is a four-and-one-half-year-old girl who loves listening to “The Muppets Movie” soundtrack, laughing at silly jokes and reading books. Esmé has been a patient at Boston Children’s Hospital since she was 8 months old, when she started seeing the Aerodigestive Clinic for chronic aspiration. She is followed by a number of specialists to treat her epilepsy, low tone, kidney and heart abnormalities, developmental delay, poor growth, lack of verbal communication, among other things. Esmé is presumed to have a genetic disorder, but, so far, she does not have a clear diagnosis.

Last week I had an appointment that I was both really looking forward to and dreading, simultaneously. The appointment was with Pediatric Advanced Care Team (PACT) at Boston Children’s. They are the group who does palliative care there.

Now, I know that most people hear “palliative care” and think very specific things about end of life care.

I did, certainly.

And, frankly, my associations with palliative care were enough to make me not want to have the meeting with them in the first place.

However, we have reached that place in Esmé’s care where, while she much more stable than ever, there are some roadblocks that affect her (and our family’s) quality of life. Several of my mom friends who also have children with similar needs suggested that it might be time to talk to palliative care.

I said, “No. Absolutely not.”

Palliative care and stress relief

But, after my knee-jerk reaction, I thought it might be smart to see if my understanding of palliative care was, in fact, accurate. And it wasn’t. Palliative care is “specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.

Wow, right? Obviously Ez has a serious illness. And, I’m sure this will surprise all of you, but there is stress (oh, God the stress …). While palliative care can be a method used in conjunction with end of life concerns, it is fundamentally focused on living–living happily and comfortably despite on-going serious health challenges. And, because we are in this for the longterm, it seems like improving Esmé’s quality of life–and the quality of life of our family unit–is sort of a no-brainer…

Read Full Story | Leave a Comment

Meet Phoebe: Swimmer, soccer player, gymnast and liver transplant recipient

Phoebe RootWhether she’s tearing across the soccer field, sticking a near perfect landing in a gymnastics routine or training for an upcoming swim meet, Phoebe Root is always on the go. As her father, David, shuttles his active 12-year-old daughter to and from meets, games and competitions, he almost can’t believe it’s the same girl who, at 8 weeks old, was diagnosed with a potentially life-threatening liver disorder.

“Looking back at how sick she was, I never would have guessed our lives would end up feeling so… normal,” says David, as he drove his daughter to an afternoon swim practice. “When she was sick, we were so focused on the details of her illness that we couldn’t see the big picture. Now that we’re living in that picture, and it feels great.”

Shortly after her birth, Phoebe was diagnosed with biliary atresia, a rare disorder that prevents bile ducts in the liver from draining correctly, causing a potential fatal buildup of toxins in the body. The diagnosis led the Root family to Boston Children’s Hospital for treatment. Once there, Phoebe’s doctors made several attempts to treat her failing liver, but no matter what they tried, nothing seemed to fully alleviate her symptoms. After six months, it was clear that her best chance at survival would be a liver transplant. She was placed on the organ donation list, and David and his wife, Amy, prepared themselves for a difficult wait in their Maine home.

Read Full Story | Leave a Comment

Minimally invasive surgery helps Rhode Island boy get back to being a kid

jonathan beach 2014[1]For Jonathan Reed, summer fun goes way beyond wave riding along New England beaches. During a recent weeklong family vacation to Universal Studios in Florida, the Rhode Island fourth-grader visited wave pools at a water park, rode gravity-defying roller coasters and sprinted from one fun-filled attraction to the next.

This dream vacation may not have been as magical if Jonathan had to continually battle ongoing stomach pain.

Read Full Story | Leave a Comment

Congenital heart disease is no match for this fighter

It’s a Saturday afternoon at Fist Fitness, a boxing gym in Westford, Mass. co-owned by Joe Bellone and Sean Eklund, nephew of the famous “Irish Micky Ward.”

A patron enters, slightly tired from a morning 5K run, but ready for another solid workout. It’s been a few months since she’s trained at the gym, but she remembers all of the motions: left, right, 1-2-3, uppercut–she’s in the zone. Her trainer, Eklund, kneels down to get to her eye level. Twelve-year old Hayden is just under 54” tall.

Hayden Schenck is not your average sixth grader. She has a zest for adventure, a love of math and a mean left hook. Her athletic achievements are all the more inspiring when you learn she was born with acute congenital heart disease and had open-heart surgery when she was just 8 months old.

While Hayden doesn’t remember the surgery, mom Heather can recall the period before and after as if no time at all has passed. Hayden was three months old when her primary care physician suggested that a pediatric cardiologist check her on again, off again heart murmur.

Read Full Story | Leave a Comment