In 1998, tragedy shattered Marie Lawson Fiala’s life as a wife, mother, and lawyer when her 13-year-old son, Jeremy, was felled by a massive hemorrhage from a ruptured artery deep in his brain. Within an hour, Jeremy was in a coma, sustained only by machines. Letters From A Distant Shore, Marie’s new memoir, tells the story of a mother’s ferocious care and fierce determination to bring her child home alive and functioning despite devastating loss. Here Marie shares her tips for dealing effectively with a child’s medical crisis.
1. Children whose parents take an active role in their health care do better.
Research from the American Academy of Pediatrics and National Institutes of Health shows that children whose parents participated in a parent empowerment program had shorter ICU and total hospital stays, as well as better outcomes. Marie’s son, Jeremy, was hospitilized for 3 months; most of that time he was critically ill in the intensive care unit. Marie and her husband stayed with Jeremy in the hospital round the clock, rotating 24 hour shifts. They’d get a little bit of sleep in a chair next to his bed and saw each other less than an hour a day that whole time, when they met for their shift change.
2. Don’t assume the doctor knows your child’s condition better than you, the parent.
There were many moments in Jeremy’s medical care when the fact that Marie and her husband being at Jeremy’s bedside made a critical difference. On one especially bad day, Marie had noticed that the drains siphoning blood from Jeremy’s brain had stopped working–and that one drain had backed up and was leaking cerebrospinal fluid under his bandages. The neurosurgeon made a cursory stop and without even examining Jeremy, told Marie, "Don’t worry about it, there’s no problem, we don’t need to do anything." Marie raised her voice at the doctor and explained that she’d been there every minute of every day and she was certain that something was wrong with Jeremy’s drains. With pressure from Marie, the neurosurgeon finally examined Jeremy for the first time, and indeed saw that there was a problem and rushed him into surgery that night. "Parents need to let go of the desire to be the ‘good parent’ for the doctors and to make everyone like you," says Fiala. "You know your child better than anyone else. Although parents may not have medical training, a mom or a dad are often better at intuitively recognizing when a serious problem arises. If something feels off, raise your concern with the doctor or nursing staff. You have to do what’s right for your child first and foremost," states Marie.
3. Hospitals are big, busy, stressful places and mistakes happen. Parents must be vigilant.
Marie’s son was paralyzed on his right side; he lay flat on this back without moving for a month. The hospital did nothing to prevent the blood clotting in his paralyzed leg. Marie and her husband, Kris, didn’t know enough to know that they should have put a compression stocking on Jeremy’s leg and taken other steps to prevent clotting. The day that Jeremy was finally able to be propped up into a sitting position for the first time, Marie’s excitement quickly turned to terror when Jeremy’s leg became hugely swollen. An ultrasound showed that he had an enormous blood clot that extended from his toes all the way up to his kidneys. He was at risk of dying from a pulmonary embolism at any moment, and his parents hadn’t even known he was in danger. Research shows that 100,000 people die needlessly each year because of preventable harm, in the form of hospital-caused infections, medication, or surgical errors. Marie says, "You are the parent are the one constant factor in your child’s care. Show up every day. Exercise basic human kindness. Learn the names of the medical staff. It’s crucial to befriend the nurses early on. Nurses are where the rubber hits the road. They can make a huge difference in the quality of hospital care for your child."
4. In addition to being his or her advocate, your child needs you to be a loving parent when they are sick.
When Marie’s son was first brought to the ICU, there was a young infant in a steel crib in the next cubicle. No one ever came to visit him. He cried constantly, terrible, piercing wails. The nurses were simply too busy to pick him up and comfort him. A month later, he "coded" while Marie and her husband were at Jeremy’s bedside, and died, without ever having felt basic human love and touch. The first time that Marie saw this child’s mother was 20 minutes after his death. Marie wishes she could say that this child’s death was an unusual circumstance, but sadly, it was the case that more than half the children rarely, or never, had visits from family members. It’s a tragedy that so many children in hospitals are neglected because their parents don’t know what to do. "Do whatever you can to be in the hospital with your child. Even the best hospital staffs can’t give your children the same tenderness and connection that you can. Your child is afraid and in pain. You, the parent, are his or her only source of love, comfort, and support. Touch, hold, talk to, read, or sing to her. Yes, your child needs you to be her medical advocate, but first and foremost they need a loving parent by their side," says Marie.
Visit the author at www.marielawsonfiala.com. Marie’s new memoir, Letters From A Distant Shore, is available on Amazon.