Courtesy of Newsweek | By Jessica Firger | 07.29.2017 | Posted 07.29.2017
Updated | This week, Connie Yates and Chris Gard said goodbye to their son, Charlie Gard. On Thursday, a judge of the British High Court ruled the 11-month-old, who had been suffering from an extremely rare and untreatable genetic disorder known as mitochondrial DNA depletion syndrome, should be taken off life-support and moved into a hospice facility. He died the next day.
The story of the young boy has stirred up an international and contentious debate about the limits of hospice and end-of-life care. The controversy also raised concerns about the rights of parents in medical decisions for children with complicated and potentially terminal illness. There were also some serious ethical challenges: the hospital’s rulings were not in line with his parents’ wishes to keep him intubated.
A painful story like this is usually a private matter for a family. But the controversy surrounding the clash between the hospital’s policy and the parents opinions has captured attention worldwide. Yates and Gard now face a long struggle to process the loss of their child, made even more complicated by the fact that they will grieve in the public eye.
Newsweek spoke with Dr. Joanne Cacciatore, a grief counselor whose area of expertise is traumatic death, particularly that of children. Cacciatore is professor of psychology at Arizona State University and founder of the MISS Foundation, a nonprofit that provides social support services to families grieving loss.
Although Cacciatore has published more than 60 papers on the subject of bereavement and traumatic death, her expertise is also firsthand. More than two decades ago, she lost her daughter, Cheyanne, at birth. “ We can’t measure the love for our children by the number of days or years or months we’ve had with them,” she says. And Cacciatore and Charlie Gard’s parents are hardly alone. Approximately 23,215 infant deaths occur each year in the United States—about 580 of every 100,000 births, according to the Centers for Disease Control and Prevention. Genetic abnormalities are among the leading causes of these losses.
What makes grieving the loss of an infant different from grieving an older child?
The death of a child at any age and from any cause is life-changing for parents. It’s always extremely painful. What makes the death of a young baby different is that often the family grieves alone. Very few people knew the child intimately other than the parents. And because babies are, of course, highly dependent on the parent for care, such a death is different in some important and really painful ways. Many parents who experience the death of a baby feel a tremendous sense of responsibility for their baby’s death.
How does the grief process change if they’re forced to go through it publicly, like Charlie Gard’s parents?
You can have people reaching out who can be very tender and very kind. But the internet is not always the most compassionate and your very private and very deep sorrow is under public scrutiny.
I deal with [grieving] parents who are in the public eye a lot, and it’s very painful for them. Being judged by family but it’s another thing to be judged by a nation. [Public attention] can really make grief complex for those families.
Does the grief process change, depending on whether the death is sudden versus expected?
The death of a child is always traumatic, no matter what. There is no better or worse way to lose your child.
Of course, there was a time when people had 10 children and expected half of them to die before their first birthday because of communicable diseases and lack of sanitation. [But today], the death of a child is always considered traumatic for families. Parents don’t expect their child to die before they do.
What do parents grieving the loss of a child experience?
The process isn’t linear. It’s messy, confusing. In the beginning, many people feel “out of body,” like it’s not real. I call that “emotional anesthesia.” That’s a good thing. It’s is our body’s defense mechanism trying to reduce the impact, the reality of the loss. You feel like you’re floating. It’s very common across the board but it’s not absolute.
Memory is often significantly impaired. We may not remember things as clearly, or we remember things differently. Huge swaths of memory may disappear. Some people also say they feel their memories are so real they can touch them.
We may find ourselves not able to sleep at all, or not able to stay awake. The same thing happens with appetite. Some people find extreme comfort in food. Others can’t keep food down. I call this phenomenon the pendulum of extremes. Grief also feels very physically heavy.
Then there are the emotions: fear, rage, jealousy confusion, especially when the child is highly dependent, like a newborn. Without the parental urge to nurture, the species would cease to exist. [But] we can’t enact that evolutionary programmed urge because the baby died. It feels like a bit of a crazed state.
Does the bereavement process become easier over time for parents that find themselves in these circumstances?
I’m not a fan of the idea of “recovery,” because I don’t think we ever recover from a catastrophic loss. But the grief can become lighter. I try to teach people how to carry it, how to turn toward it, and how to stay connected to the child who died. We need space and people to remember with us in nonjudgmental ways.
People often think that parents should go on and have another child. But that advice often doesn’t help. I think sometimes people don’t see a very young child as a separate identity. But parents do. The parents know who this child was and that kids are not interchangeable. That other child does not replace the child who died.
For families that do have another baby, it’s important that people in their circle recognize that this child doesn’t replace the one who died. That differentiation honors the baby who died and the one who comes after the death.
Why do outsiders say the wrong thing so often at times like this?
Because it makes people very uncomfortable. No one wants to think of babies dying. They’re so innocent and so vulnerable and so helpless that no one wants to think that a baby would actually die. We’re a grief-avoidant culture and don’t talk much about death.
We often don’t know what to say to people suffering a loss, regardless of the age of the deceased. In the case of parents grieving their child, what are compassionate and useful things to say?
Every family with whom I’ve worked has appreciated when people ask how they feel and give them space to talk about that.
Some of the best approaches are practical, like a meal train (coordinating with friends and other community members to provide prepared meals to a grieving family). But if you’re going to do a meal train don’t knock on the parents’ door. Just leave the food and text them about the a casserole at their door, and then go so that they don’t have to entertain and answer questions. Expect absolutely nothing and give all the compassion and love you can.
Most families love when people remember their child. It’s as simple as using the child’s name in a condolence card or little acts of remembrance, such as a small donation in their name or planting a tree somewhere.
I avoid platitudes, trying to fix them, and trying to explain why this happened. Even if parents know why their child died there’s no good reason. Some of the worst offenders in this regard are within the spiritual community. “God needed an angel to tend his garden,” someone might say, as if God had a landscaping problem. It’s ridiculous.
What does research tell us about how parents may cope with their loss?
Research shows that social support is one of the most salient predictors of either better or worse adjustment. How parents are supported, how the hospital staff treat them and their baby, how the peripheral family treats them and their baby, how their partner treats them, how their neighbors treat them—all of these are key. The absence of of social support predicts poor outcomes.
[Strong social support] manifests as things like “my neighbor comes over once a week and sits down and lets me cry with her,” or “my pastor came over everyday for a week and he didn’t even bring his bible and sat and held our hands,” or “my employer gave me three-weeks leave and when I came back they had a picture of our son on my desk.”
Is there a certain amount of time parents who lose a child could expect to grieve?
We’re measuring bereavement the wrong way. In a study I conducted, known as the TEAR study, 70 percent of [the deceased] were under age 1. It showed a majority of the parents had elevated levels of emotional distress. That finding is important because if most parents are feeling that way, then it’s normal. For most of the parents in the study the mean time since loss was 4.36 years. And according to the questionnaires that measured depression and anxiety, most of them still had clinical symptoms 4.36 years later. To me, that finding suggests these are not clinical symptoms, these are normal feelings.
This story has been updated with information about infant mortality rates in the U.S.