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…

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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.

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How can I find quality TV shows for my 7-year-old granddaughter?

Michael RichQ: My daughter just posted a plea on her Facebook wall asking for help finding quality TV shows for elementary-age girls (my granddaughter is 7). I know she has been frustrated by the shows her daughter currently watches, as she believes the female characters act cruelly to each other, and she’s concerned about how this kind of messaging affects her daughter. I think she is looking for both show recommendations and if there is a way that she, and other parents like her, can influence what is presented on TV.

~ iGranny, USA

A: Dear iGranny,

Your daughter’s question is one with which many parents struggle when searching for developmentally optimal content that features positive, inspiring role models with whom their children can relate. The issue becomes even deeper when specifically looking for positive portrayals of women and girls in children’s media, as female characters have historically been underplayed or portrayed as weak, sexualized or mean-spiritedly competitive with other female characters. Research has repeatedly shown that these portrayals of female characters can negatively influence how young girls view their bodies and gender roles, yet even today, these negative stereotypes can be found in many movies and TV shows.

You and your daughter are not alone in wanting to guide your granddaughter toward media that will be enlightening, empowering and uplifting for her. Although it may seem daunting, you have come to the right place – there are many practical steps you can take when seeking and selecting media for your granddaughter:

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Brewing a great doctor-patient relationship

20150422_BrookeStarbucks-14“I love working with Brooke and her mom. They are a great pair, and Brooke has grown into a wonderful, independent young woman who can advocate for herself. She went from being a sweet kid who couldn’t walk five steps without pain to this vibrant college student who treks over here from Northeastern University, bringing me a latte, ready to conquer the world,” says Dr. Kate Ackerman, medical director of Boston Children’s Hospital’s Female Athlete Program.

Brooke Lombardi, her mother Shari and Ackerman have a pretty special relationship. Brooke, who grew up in Miami, started seeing Ackerman in 2010 when she was 15. Today, Ackerman helps Brooke, a college student who continues to have minor medical issues, navigate the health care system, helping to provide a safety net for a young adult far from home.

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