POMONA, Calif. When you first meet 17-month-old Aaron Martinez, its not obvious that something is catastrophically wrong.
What you see is a beautiful little boy with smooth, lustrous skin, an abundance of glossy brown hair, and a disarming smile. What you hear are coos and cries that dont immediately signal anything is horribly awry.
But his parents, Adriana Pinedo and Hector Martinez, know the truth painfully well.
Although Adrianas doctors and midwife had described the pregnancy as perfect for all nine months, Aaron was born with most of his brain cells dead, the result of two strokes and a massive bleed he sustained while in utero.
Doctors arent sure what caused the anomalies that left Aaron with virtually no cognitive function or physical mobility. His voluminous hair hides a head whose circumference is too small for his age. He has epilepsy that triggers multiple seizures each day, and his smile is not always what it seems. It could be a smile; it could be a seizure, his mother said.
Shortly after Aaron was born, doctors told Adriana, 34, and Hector, 35, there was no hope and they should let nature take its course. They would learn months later that the doctors had not expected the boy to live more than five days. It was on Day 5 that his parents put him in home hospice care, an arrangement that has continued into his second year of life.
The family gets weekly visits from hospice nurses, therapists, social workers, and a chaplain in the cramped one-bedroom apartment they rent from the people who live in the main house on the same lot on a quiet residential street in this Inland Empire city.
One of the main criteria for hospice care, largely for seniors but also applied to children, is a diagnosis of six months or less to live. Yet over the course of 17 months, Aarons medical team has repeatedly recertified his hospice eligibility.
Under of the 2010 Affordable Care Act, children enrolled in Medicaid or the Childrens Health Insurance Program are allowed, unlike adults, to be in hospice while continuing to receive curative or life-extending care. Commercial insurers are not required to cover this concurrent care, but many now do.
More than a decade since its inception, concurrent care is widely credited with improving the quality of life for many terminally ill children, easing stress on the family and, in some cases, sustaining hope for a cure. But the arrangement can contribute to a painful dilemma for parents like Adriana and Hector, who are torn between their fierce commitment to their son and the futility of knowing that his condition leaves him with no future worth hoping for.
We could lose a life, but if he continues to live this way, well lose three, said Adriana. Theres no quality of life for him or for us.
Aarons doctors now say he could conceivably live for years. His body hasnt stopped growing since he was born. Hes in the 96th percentile for height for his age, and his weight is about average.
His parents have talked about graduating him from hospice. But he is never stable for long, and they welcome the visits from their hospice team. The seizures, sometimes 30 a day, are a persistent assault on his brain and, as he grows, the medications intended to control them must be changed or the doses recalibrated. He is at continual risk of gastrointestinal problems and potentially deadly fluid buildup in his lungs.
Adriana, who works from home for a nonprofit public health organization, spends much of her time with Aaron, while Hector works as a landscaper. She has chosen to live in the moment, she said, because otherwise her mind wanders to a future in which either he could die or he wont, and Ill end up changing the diapers of a 40-year-old man. Either of those, she said, are going to suck.
While cancer is one of the major illnesses afflicting children in hospice, many others, like Aaron, have rare congenital defects, severe neurological impairments, or uncommon metabolic deficiencies.泭
We have diseases that families tell us are one of 10 cases in the world, said Dr. Glen Komatsu, medical director of Torrance-based TrinityKids Care, which provides home hospice services to Aaron and more than 70 other kids in Los Angeles and Orange counties.
In the years leading up to the ACAs implementation, pediatric health advocates lobbied hard for the concurrent care provision. Without the possibility of life-extending care or hope for a cure, many parents refused to put their terminally ill kids in hospice, thinking it was tantamount to giving up on them. That meant the whole family missed out on the support hospice can provide, not just pain relief and comfort for the dying child, but emotional and spiritual care for parents and siblings under extreme duress.
TrinityKids Care, run by the large national Catholic health system Providence, doesnt just send nurses, social workers, and chaplains into homes. For patients able to participate, and their siblings, it also offers art and science projects, exercise classes, movies, and music. During the pandemic, these activities have been conducted via Zoom, and volunteers deliver needed supplies to the childrens homes.
The ability to get treatments that prolong their lives is a major reason children in concurrent care are more likely than adults to outlive the six-months-to-live diagnosis required for hospice.
Concurrent care, by its very intention, very clearly is going to extend their lives, and by extending their lives theyre no longer going to be hospice-eligible if you use the six-month life expectancy criteria, said Dr. David Steinhorn, a pediatric intensive care physician in Virginia, who has helped develop numerous childrens hospice programs across the U.S.
Another factor is that kids, even sick ones, are simply more robust than many older people.
Sick kids are often otherwise healthy, except for one organ, said Dr. Debra Lotstein, chief of the division of comfort and palliative care at Childrens Hospital Los Angeles. They may have cancer in their body, but their hearts are good and their lungs are good, compared to a 90-year-old who at baseline is just not as resilient.
All of Aaron Martinezs vital organs, except for his brain, seem to be working. There have been times when weve brought him in, and the nurse looks at the chart and looks at him, and she cant believe its that child, said his father, Hector.
When kids live past the six-month life expectancy, they must be recertified to stay in hospice. In many cases, Steinhorn said, he is willing to recertify his pediatric patients indefinitely.
Even with doctors advocating for them, its not always easy for children to get into hospice care. Most hospices care primarily for adults and are reluctant to take kids.
The hospice will say, We dont have the capacity to treat children. Our nurses arent trained. Its different. We just cant do it, said Lori Butterworth, co-founder of the Children's Hospice and Palliative Care Coalition of California in Watsonville. The other reason is not wanting to, because its existentially devastating and sad and hard.
Finances also play a role. Home hospice care is paid at a set by Medicare slightly over $200 a day for the first two months, about $161 a day after that and it is typically the same for kids and adults. Children, particularly those with rare conditions, often require more intensive and innovative care, so the per diem doesnt stretch as far.
The concurrent care provision has made taking pediatric patients more viable for hospice organizations, Steinhorn and others said. Under the ACA, many of the expenses for certain medications and medical services can be shifted to the patients primary insurance, leaving hospices responsible for pain relief and comfort care.
Even so, the relatively small number of kids who die each year from protracted ailments hardly makes pediatric hospice an appealing line of business in an industry craving growth, especially one in which private equity investors are active and seeking a big payday.
In California, only 21 of 1,336 hospices reported having a specialized pediatric hospice program, and 59 said they served at least one patient under age 21, according to of 2020 state data by Cordt Kassner, CEO of Hospice Analytics in Colorado Springs, Colorado.
Hospice providers that do cater to children often face a more basic challenge: Even with the possibility of concurrent care, many parents still equate hospice with acceptance of death. That was the case initially for Matt and Reese Sonnen, Los Angeles residents whose daughter, Layla, was born with a seizure disorder that had no name: Her brain had simply failed to develop in the womb, and an MRI showed fluid taking up space where the brain wasnt, her mother said.
When Laylas team first mentioned hospice, I was in the car on my phone, and I almost crashed the car, Reese recalled. The first thought that came to mind was, It is just the end, but we felt she was nowhere near it, because she was strong, she was mighty. She was my little girl. She was going to get through this.
About three months later, as Laylas nervous system deteriorated, causing her to writhe in pain, her parents agreed to enroll her in hospice with TrinityKids Care. She died weeks later, not long after her 2nd birthday. She was in her mothers arms, with Matt close by.
All of a sudden, Layla breathed out a big rush of air. The nurse looked at me and said, That was her last breath. I was literally breathing in her last breath, Reese recounted. I never wanted to breathe again, because now I felt I had her in my lungs. Dont make me laugh, dont make me exhale.
Laylas parents have no regrets about their decision to put her in hospice. It was the absolute right decision, and in hindsight we should have done it sooner, Matt said. She was suffering, and we had blinders on.
Adriana Pinedo said she is infinitely grateful for hospice, despite the heartache of Aarons condition. Sometimes the social worker will stop by, she said, just to say hello and drop off a latte, a small gesture that can feel very uplifting. Theyve been our lifeline, she said.
Adriana talks about a friend of hers with a healthy baby, also named Aaron, who is pregnant with her second child. All the stuff that was on our list, theyre living. And I love them dearly, Adriana said. But its almost hard to look, because its like looking at the stuff that you didnt get. Its like Christmas Day, staring through the window at the neighbors house, and youre sitting there in the cold.
Yet she seems palpably torn between that bleak remorse and the unconditional love parents feel toward their children. At one point, Adriana interrupted herself midsentence and turned to her son, who was in Hectors arms: Yes, Papi, you are so stinking cute, and you are still my dream come true.
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