Pediatric palliative care has changed considerably in the
past decade in the United States. It is no longer just about end-of-life care,
but rather addresses the logistical, emotional, and spiritual needs of children
and their families.The Dell Children’s Hospital Palliative Care team in Austin,
Tex., directs and manages the complex care of three children photographed here.
The children are the beneficiaries of new technologies that
have already allowed them to live beyond their expected life terms. All three
families focus on their children living --- in the past, care for critically
ill children like these was dictated by the idea that their lives would soon
end. Palliative Care makes this new thinking possible.
Whether by consult online or in person, palliative care
physicians and social workers address issues that arise with these young
patients’ afflictions. Their conditions are so complex that an enormous amount
of coordination must take place in order for numerous specialists to
communicate and then address an issue.
When Casey Barnes, five, for example, suffered from
gastro-intestinal bleeding, her parents were not receiving the proper
instructions or answers from her specialists. It was the palliative care team
that brought the various doctors together in a room to solve her alarming
Brief history of the three children photographed:
Gerardo is a nearly two-year old boy with many problems.
Primary among them is hydrocephalus, a condition of excessive accumulation of
fluid in the brain. In addition, he suffers from hypothyroidism, scoliosis,
tracheomalacia, and Atrial Septal Defect. He has many other afflictions due to
complications from these primary conditions.
Marley, 5, was born with a rare form of terminal dwarfism
called rhizomelic chondrodysplasia punctata, or “rhizo.” Fewer than 100 children worldwide
suffer with this condition. Eighty percent of children born with this disease
die within their first year of life. Marley, at five, has good days and bad,
but moves around with ease and surprises her doctors every day. Her mother,
Crystal, reports that Marley’s doctors don’t know what to make of her—she’s
breaking the mold for someone with her condition, Crystal says, and no one
knows what she’ll do next.
The third child is eight-year-old Casey, who has a number of
primary issues including HIE (Hypoxic Ischemic Encephalopathy); Quadriplegia
Cerebral Palsy; and a host of respiratory problems. In addition to CP, Casey is
missing basic reflexes --- she is unable to suck, swallow, gag or blink. Without the ability to swallow, Casey's
airway is in constant risk. Suction
equipment is needed to remove secretions and anything else in her mouth/throat
in order for her to breathe. Also,
without the ability to swallow Casey cannot eat by mouth and is fed with a