Long Term Care Needed for an Increasing Number of Families of Babies With Special Needs

The number of children who need specialized equipment and intensive medical intervention at birth is on the rise. Sadly, once a family walks out the hospital door, practical supports are in short supply.

By Mariam Edelson, author Battle Cries

Infants with special needs are born every day. Mine arrived in a Toronto hospital following a glowing pregnancy in 1990. No advance warning. My son's birth sparked a specialized medical team into action. Its role? To breathe life into my struggling newborn. Jake sputtered, gasping for breath in the expert hands of highly trained physicians and nurses. Several long days later he was transferred to a different neonatal intensive care unit in a hospital close to our home. Some days later, my then-husband and I brought him home.

The human and financial resources a hospital has at its disposal will differ between communities - rural and urban, remote area or on-reserve. A child living at home may be brought in for a few hours to see specialist in any number of areas: respiratory, feeding or neurology. Hospitals are twenty-four/seven operations; each one has its own shift schedules, protocols, staff rotations. An array of people carry out necessary tests and tasks, and the experience can be discomfiting for parents. Capturing an overall picture of a child's challenges takes a concerted effort. However, in the hospital environment whatever needs doing tends to get done - quickly and professionally.

Sadly, once a family walks out the hospital door, practical supports are in short supply. For many children, the full nature and extent of their challenges only become evident over time. A mother notices her baby doesn't react when she claps her hands in play. A newborn loses precious grams, unable to suck strongly enough to obtain sufficient nourishment; dedicated breastfeeding specialist with the finest accoutrements of the art cannot conquer the bay's "lazy" suck. Parents anticipating promised milestones during the first few months of their tiny daughters' life remark that she cannot hold up her head; even propped against pillows, it droops like a wilted lily.

Fuelled by founts of adrenaline, a mother might seek advice from her family doctor. Physicians meet new parents plagued more by worry than the usual bone-tired weariness. It is not unusual for mother and babe to return home with more question than answers, "We'll test again in two months," say the kindly doctor, holding the baby gently under the arms, bouncing her little sausage feet lightly on the surface of this desk. "We should know better than how your daughter's muscle tone is evolving. Try not to worry. Some babies take longer to develop."

Tests may be ordered, a brain scan or feeding study. These investigations are necessary of course; turning our backs on science would be imprudent. Nonetheless, enduring any battery of tests is troubling. I watched in horror as my five-month-old son was strapped into a gizmo to check his ability to digest foods of varying densities. He nearly choked on the gruel technicians thrust into his mouth. I could barely contain myself. It seemed an eternity that he was tied up, with no one to soothe him as she struggled for breath on the other side of a glass partition. At the time, my gut told me to grab him and escape what seemed a hideous, heartless pace.

Other families will recount their own thorny tales. Imagine: A baby's sweet face hurls into contortions. His jaw locks. His tiny torso becomes stiff as a board. Suddenly he resembles a bizarre reflection thrown by a midway mirror. When the family rushes the struggling infant to emergency, the doctor on duty tells his posse of medical students to "Treat the seizure, not the parents." An intravenous needle is trust into a tiny vein; mediation shoots in to calm the electric storm in the baby's brain. No question, this is a rough and tumble induction into the ranks of active parenting duty.

I have listed to several mothers and fathers tell their story while still in the throes of anguish as they wait for a diagnosis (and prognosis) to be reached." Nothing has prepared me for this," parents will say. "I have never felt so helpless." The wait is excruciating. One woman told me that when at four months old her daughter's seizures propelled them to Emergency at the Children's hospital of Eastern Ontario, she remembers thinking, "What do you mean there are no firm answers? This is Ottawa, not Kabul. Certainly someone must know what's going on."

Interestingly, while it may seem counterintuitive, the number of children who need specialized equipment and intensive medical intervention at birth is on the rise in North America and elsewhere. Indeed the advent of new medical technologies and procedures means the survival rate for children born with complex health needs is increasing. The stakes are high and not just for health care practitioners. Increasing numbers of parents are compelled by circumstance to offer home, hearth and complex care to their venerable offspring.

Once a diagnosis is made, a treatment plan is put in place. Parents may adjust to the fact that the baby they have brought into the world is not the one they expected. Shock; denial; anger… powerful phrases of grief are triggered. Parents cry. Spouses collapse into the comfort of one another's arms. Or don't. In an ideal situation, the bonds of love that carry us humans through so many twists of fate are fostered.

My own sense during those first roller-coaster months of my son's life was that between the exhaustion, disappointment and bewilderment. I would have happily curled into a ball under his big metal hospital bed for weeks at a time, trying to breathe for him. Fortunately I was able to lie next to him and caress his head, his hands and legs - any spot that had no tubes or IV cables protruding. For what felt like an eternity, we seemed to live in a parallel universe; unfamiliar hospital face and voices inhabited our days and nights. It took a conscious effort not to withdraw into sadness and confusion.

In these circumstances a new era commences for parents. Families are captured in a strange episode that resembles a novel with a poorly constructed plot line - exactly where is the story going? It is not that our babies are any less adored, but they are different than we expected. Unlike other members in one's childbirth class, these initial months tend to be wrought more with angst than awe. And yet most of these new parents share one profound realization: The little package in the crook of one's arm has enormous needs. We are her only chance in the world. When a child has special needs, this realization feels particularly onerous. It is like waking up against the ropes in a boxing ring as some contender suddenly delivers a powerful uppercut to your jaw. You just didn't see it coming.

Copyright Miriam Edelson. Excerpted from her book Battle Cries: Justice for Kids with Special Needs