When a New Mother Has to Become a Full-Time Nurse
They are the mothers who maintain loose-leaf notebooks so jammed with precise notations on drug dosages, monitor readings and feedings that they resemble hospital charts. The counter tops in their cramped kitchens bristle with medication vials, miniature syringes and special infant formulas. Their refrigerators are papered with instructions for performing cardiopulmonary resuscitation and lists of emergency telephone numbers. Green and silver oxygen tanks stand at the ready in the dining room.
These are the mothers who are rarely more than a few seconds away from their babies, who have been forced by circumstance to quit their jobs and put their lives on indefinite hold, tethered to newborns too precarious to entrust to a baby-sitter, a day-care center or even, in some cases, a close relative. Some have installed mini-hospital rooms in their nurseries to provide sophisticated care for babies born too soon, too small or with devastating birth defects.
As recently as 15 years ago, many of these infants probably would have died in the first days or weeks of life, some without leaving the hospitals where they were born. A number of those who did survive would have been placed in institutions skilled at caring for babies with specialized medical needs.
These days, because of technological advances and managed care, with its emphasis on moving patients out of hospitals and into less-expensive settings, babies such as these are going home to be cared for by their families. While fathers and other family members do take care of these babies, most of the burden is shouldered by mothers, health experts say.
Although these parents routinely are taught how to use complicated, life-sustaining equipment and to take care of their babies’ medical needs, the physical and psychological stress can be considerable for mothers who double as quasi-medical personnel.
“We’re seeing premature infants [born three or four months prematurely] who’d never have made it 10 years ago,” said Karen Ryalls, executive director of United Cerebral Palsy of Tampa. “We can provide the medicines and the machines, but they come with a price. These infants are likely to have problems that are going to be with them for a very long time. For the families I work with, it’s a very harrowing experience.”
It is also an experience that an increasing number of parents are engaged in as the locus of care has shifted from the hospital. According to statistics compiled by the U.S. Department of Health and Human Services, 4 million children have significant medical problems, including about 2 million with mental retardation or developmental disabilities, and 400,000 who need long-term care. Most of these children are being cared for at home.
Problems Add to the Period of Adjustment
For families already reeling from the birth of a baby, the shock of learning that the child has life-threatening problems, even if they appear to be temporary, can be terrifying.
“Ten years ago, my pediatrician told me, my son probably would have been a SIDS death,” said Kathy Hardy, of Springfield, Va., whose son, Clayton, was diagnosed with apnea, a serious breathing problem, a week after his birth last May. “We were told never to be more than two to four seconds away from him.”
Hardy says that after doctors told her the reason her son periodically turned blue and stopped breathing, one of her first thoughts was, “I don’t even know how to be a mom yet; how am I doing to deal with a life-threatening condition?”
“When they told me what I needed to do, I told my husband, ‘I can’t do this,’ ” recalled Amy Menache, 33, of Germantown, Md. Menache’s daughter Sivan was born 9 1/2 weeks early last March weighing less than 3 pounds. Within hours of her birth, Sivan was diagnosed with esophageal atresia, a birth defect in which the stomach and esophagus are not connected. Babies with esophageal atresia often have complicated medical problems involving multiple organ systems.
“The truth is,” Menache said, “I didn’t have a choice. If I ever wanted her to come home, I had to do it.”
Sivan, who spent the first six months of her life in three hospitals, requires round-the-clock care. Her mother is on duty from 10 a.m. to 10 p.m., relieved by a nurse who arrives at 10 p.m. for the second 12-hour shift.
Joanne Schuyler, a nurse on the maternal-child team of Home Health Clinical Services in Northern Virginia, said that despite the demands, most parents want to have their babies come home and rise to the considerable challenges of being parent-caregivers.
“Even the babies with complicated needs are much more comfortable at home,” said Schuyler.
The level of medical care required to manage these high-risk babies at home would give pause to a well-trained physician or nurse.
Other than a continuous gurgling sound, 7-month-old Sivan Menache makes no noise. She can’t cry audibly because she has a tracheostomy tube in her throat that enables her to breathe.
Every 15 minutes or so while Sivan is awake, someone must suction the tube to prevent it from becoming clogged with saliva or mucus; if it’s not cleared, she could choke to death. Her caregivers are also kept busy washing off the filter top of the trach tube, which Sivan recently has learned to fling or stick in her mouth.
In addition to the tracheostomy tube, Sivan, a placid 15-pounder with a ready smile, has another surgically created hole in her neck, called a fistula, that drains saliva produced when she swallows. She is fed every 4 1/2 hours through a tube inserted in a surgically created buttonhole in her stomach covered by a surgical snap.
Birth Defect Not Detected Early
Sivan’s medical problems were not detected before her premature birth last spring. After delivery, doctors diagnosed esophageal atresia, a birth defect that occurs in one of every 3,000 to 5,000 births. The condition occurs very early in fetal development when the esophagus fails to develop properly.
While the demands of caring for Sivan at home are extraordinary, many parents who take their babies home must be able to deliver a range of medical services such as giving shots, changing and cleaning various kinds of tubes, hooking up oxygen, administering frequent doses of medication and, if necessary, administering lifesaving cardiopulmonary resuscitation on babies the size of small cats.
Regardless of the outside support, families bear the burdens --psychological, physical and financial--of care-giving. For parents like Amy Menache, care-giving consumes their lives.
Because someone must watch Sivan 24 hours a day, her mother can leave her only if she watches a portable television monitor, its miniature camera trained on the crib.
Caring for her daughter “is a full-time job, and it’s exhausting,” Menache said. She would like to return to work as a paralegal, a job she left two years ago while she was undergoing infertility treatments but doesn’t see how it will be possible for the foreseeable future.
“We could certainly use the money,” said Menache, whose husband, Isaac, works as a photographer at a small newspaper in Reston, Va., and some days spends up to two hours commuting one way from the couple’s home. “We’re not rich, we’re middle class, and we’re living on one income.”
Menache said the couple spent $12,000 of their savings on in-vitro fertilization and then more than $1,300 on a nurse for Sivan before they were approved for Medicaid. The baby’s bills for in-home medical care total about $100,000 annually and are covered by Medicaid.
Because only she and her husband and a nurse are trained to care for Sivan, Amy Menache cannot leave the baby with a sitter, even her mother.
“I love my family dearly, but it’s a humongous responsibility,” Menache said.
These days Amy Menache’s chief source of support outside her family is the Internet, which enables her to correspond with other parents whose children have esophageal problems.
“I have good days and bad days,” Menache said. “Some days I just sit here and cry and say I can’t do this. But you just keep reminding yourself that there are families out there who have it so much worse.”
