Whether you find out from a fetal ultrasound or soon after delivery, it's hard to learn that your newborn baby has a serious medical condition.
Each year, about 120,000 infants are born with problems including heart defects, blood disorders such as hemophilia or sickle cell disease, physical abnormalities or cancer, according to the U.S. Centers for Disease Control and Prevention.
Landing in the NICU
It's almost universal among parents that "your first reaction is shock and denial," says Allison Scobie-Carroll, director of social work at Boston Children's Hospital. "It's sort of a trauma response -- it creates the sense of being in a terrible dream. And that's natural."
But there's little time to let the news sink in, as families, already exhausted and depleted from the delivery and diagnosis, are immersed in the unfamiliar world of the neonatal intensive care unit.
The entire staff is attuned to "the fact that this is an unusually stressful and potentially frightening time for a family," Scobie-Carroll says. They introduce parents to the new environment and make them aware of the array of services at hand, from social work to chaplaincy to resources for nearby housing.
In the most difficult situations -- parents confronting catastrophic illness and the possible loss of their child -- mental health and bereavement resources are available, too.
[Read: 7 Ways to Help a Loved One Grieve.]
It's a monumental task parents face: rapidly absorbing reams of information about the medical condition and its implications, as they struggle to make the best decisions for their newborns.
At Boston Children's, staff members hold regular team meetings so parents can hear daily updates on their child, Scobie-Carroll says. She urges parents to bring in their "natural supports" of extended family and friends, to help them deal with whatever shock they're experiencing, process information and talk out major medical decisions.
Throughout the hospitalization, one parent usually stays at the baby's bedside overnight. If possible, parents should take breaks from the hospital environment and spend some restorative time at home. "It's a necessity to survive what parents are called upon to do in the long run -- they have to rest," Scobie-Carroll says.
Telling Other Children
For parents with other children, an added concern is how much to tell them about the health situation and what words to use. Simple language is best for preschoolers, Scobie-Carroll says: "The baby is sick." "We're taking care of the baby." "There's something wrong with some part of the heart, but we're trying to heal it."
With older children, honesty is key. Without sharing every detail, she advises, you can let older kids and teens know you're worried: "That gives them a window into what is happening for the parents, so there isn't a family secret going on."
Straight Talk From Doctors
About three years ago, Rick Smith's son Noah was born with Down syndrome. While their pediatrician was "fantastic," Smith, who lives in Texas, says hospital staff delayed telling the family about the diagnosis and offered little information on Down syndrome other than an "outdated, inaccurate pamphlet."
To help families facing a similar situation, Smith started the widely read Noah's Dad blog and related social media channels. If parents sense that all is not well with their newborn, his advice is to speak up. In their second pregnancy, he says, he and his wife told their new OB-GYN, "'Hey, when that baby comes out, you tell us, right there in the delivery room, if you have any concerns, if there's anything going on -- just be upfront, shoot from the hip and tell us.'"
Letting Go of the 'Perfect Baby'
When a baby is born with a serious medical problem, "there is a grieving process when parents realize that ideal baby they'd always anticipated isn't the baby they're going to have," says Edward McCabe, a pediatrician and geneticist and chief medical officer at the March of Dimes Foundation in White Plains, New York.
McCabe tends to babies with conditions such as cleft lip and palate. "It's always important to help the parents see something that's special about their baby," he says. "I would always comment on, you know, 'Your baby has beautiful eyes.' -- just something to help the parents focus away from the abnormalities they may be seeing, and something they can focus on that may be more positive in their mind."
He advises parents in this situation to talk to a genetics expert, who can educate and reassure them about the future, and discuss the odds of other children being born with the condition.
Thinking About the Future
Planning for life after discharge includes finding a good local pediatrician and nearby services. Meeting the baby's health and safety needs at home is a priority and could involve parents learning how to use a feeding tube or handle dietary limitations. For babies with cleft palate, for instance, certain kinds of bottle nipples can make feeding easier, until they're old enough for corrective surgery.
With a serious chronic illness, challenges can be lifelong and evolve over time, Scobie-Carroll says, and a child may require multiple surgeries or hospitalizations. Even when a condition seems resolved, families carry the worry of recurrence, and she advises parents to be informed so they know what signs to look out for and keep up with preventive care.
But, leading as normal a life as possible is important. Despite their uncertainty, anxiety and ongoing vigilance, part of the challenge for these families is "to live fully in the now," Scobie-Carroll says.
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