Tuesday, June 26, 2018

She weighed only a pound when born. This is how a new approach in Halifax is fighting for her life

reposted from


https://www.theglobeandmail.com/canada/article-in-halifax-world-class-nicu-allows-babies-and-families-to-room-in/






Andy Adams holds his daughter, Paizlee, for only the second time in their suite at the IWK Health Centre’s new neonatal intensive care unit in Halifax.
DARREN CALABRESE/THE GLOBE AND MAIL

Her mom and nurses call Paizlee Rose Adams “Mighty Mouse,” but her daddy is more plainspoken. He calls his little girl a scrapper.
She is both.
Weighing in at just over a pound, Paizlee entered the world on April, 17 weeks before her late-August due date. The lack of a nursery set up in the Adams’s Prince Edward Island home was the least of their worries that day. Neither Paizlee’s heart nor her lungs were fully developed and her skin was what her mom, Emily McCardle, described as “see through.”
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“As soon as she was born – you know how you wait for the cry? – there was no cry. Nothing,” Ms. McCardle recalled with an Islanders’ lilt in her voice. “She was, they say, pretty much as early as it gets. We didn’t know if she was going to make it.”
That was more than 50 days ago. Although Paizlee just hit two pounds on the scale and spends most of her time in a carefully calibrated incubator – she will for the foreseeable future – she wakes up most mornings alongside her parents, who room-in with her on a custom-built double bed. Its dorm-style feel belies the fact that, even at half completion, the new neonatal intensive care unit (NICU) at Halifax’s IWK Health Centre is a global standout.
The IWK is thought to be the first hospital in the world to have private rooms with double beds in the NICU designed for whole families – two adults with room for siblings if they squeeze. The design makes room for parents to stay around the clock and take a hands-on role in their baby’s care at NICU North, which opened in April, just days before Paizlee was born.

Emily McCardle stands at the noise-reducing sliding door while getting updated by doctors on Paizlee’s progress.
DARREN CALABRESE/THE GLOBE AND MAIL
A chart updated daily in Paizlee's suite at the IWK Health Centre.
DARREN CALABRESE/THE GLOBE AND MAIL

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IWK Health Centre
2 km
More than six years in the making, NICU North was built in line with an increasing body of research on “family-integrated” newborn care that shows preterm babies whose parents room-in with them (as opposed to visiting for a few hours a day in traditional “open-bay” nurseries) have better health and development outcomes.
In addition to gaining weight faster, these babies drink more human milk and experience less stress. In Paizlee’s case, her doctors have noticed she needs less oxygen and is better able to regulate her body temperature when she is skin-to-skin with her mother.
Median human milk consumption for infants weighing one kilogram or less
mL/kg per day
NICU with single-family rooms
Conventional "open bay" NICU
010203040506070Day 7Week 2Week 3Week 4Week 5Week 63.32.8
THE GLOBE AND MAIL, SOURCE: JOURNAL OF PEDIATRICS
DATA
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PeriodNICU with single-family roomsConventional "open bay" NICU
Day 73.32.8
Week 227.110.8
Week 36012.1
Week 467.412.5
Week 558.317.5
Week 647.517.1

MEDIAN HUMAN MILK CONSUMPTION FOR INFANTS WEIGHING ONE KILOGRAM OR LESS

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The benefits do not stop at discharge: By the time they reach 18 to 24 months, preterm babies who had single-family rooms show improved language and cognitive development compared with those who stay in traditional-style NICUs, according to a 2017 study of about 700 babies conducted in Rhode Island and published in the Journal of Pediatrics.
Parents themselves show improved outcomes, too: They leave the hospital reporting more confidence and less stress than those who are unable to room-in with their babies.
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The idea of providing newborn care that recognizes the importance of families has been a mainstay in Canadian health care for decades – it is one of the reasons skin-to-skin interaction is encouraged between mothers and their babies. The approach has begun to revolutionize the treatment of babies who are exposed to opiates in the womb. Those that are allowed to room-in with their mothers require dramatically less drug treatment and fewer interventions; they often leave the hospital sooner.
Ninety-five per cent of Canadian maternity hospitals actually have policies that support parents staying at their baby’s bedside overnight. However, few have the infrastructure to make it happen, according to data collected by the Public Health Agency of Canada (PHAC). Just 8 per cent of hospitals actually make around-the-clock rooming-in possible in the NICU according to PHAC’s new national guidelineson family-centred newborn care published last December.
“That’s not because we’re trying to be nasty. In the NICU, there has been a presumption that these are very sick babies and we have believed up to now that the best thing we can do … is to keep their parents away and give them the best technological care we can,” said Beverley Chalmers, an international perinatal health consultant based in Kingston. In addition to helping author some of the PHAC guidelines, she has worked with the World Health Organization and recently published the book Family-Centred Perinatal Care: Improving Pregnancy, Birth and Postpartum Care.
The Canadian guidelines, which are not binding, do set aspirational standards for hospitals. The updated version released last December encourages increased initiatives that deepen families’ involvement. Enabling rooming in is at the top of that list.
“This approach has given babies back to their mothers in a NICU setting,” Dr. Chalmers said, adding: “This is an integral part of clinical care. It’s not just about what medicines they get, what equipment is used to keep them breathing. They need to be held … they need the comfort and love of a person.”

Nurses adjust Paizlee in her incubator at the IWK Health Centre make her more comfortable.
DARREN CALABRESE/THE GLOBE AND MAIL

Tanya Bishop, IWK’s NICU operations manager, led a team at the hospital that was propelled by that notion, backed by the emerging science showing just how vital mothers are to their babies. With the blessing of the hospital administration, the team set out on a worldwide search for the best family-centred practices. Their hunt took them to Sweden, Norway and Estonia, where the family-centred model was pioneered decades ago, albeit unintentionally.
Under Soviet control in the late 1970s, a facility for preterm infants in Tallinn, Estonia, required mothers to stay in the hospital because of a nurse shortage. While hospital staff assisted where possible, including with providing medications, mothers were their babies’ main caregivers. Dr. Adik Levin would go on to publish about the corresponding decrease in infections, need for antibiotics and other medical interventions the hospital observed as a result. Dr. Levin and his team noticed faster recoveries from childbirth among mothers.
The team from Halifax took what they could from the models in Estonia, Norway and Sweden and made improvements, such as adding privacy screens that fully shut and double beds instead of two singles pushed together, based on input gleaned from Maritime families with experience in the old NICU.
The result is a series of rooms with 23 beds – the number will climb to 45 once the hospital raises the $8.5-million required to complete the $34.5-million, donor-funded renovation – each designed to accommodate not just mothers, but the baby’s whole family. The aim is to add to existing research, which has focused almost exclusively on babies’ contact with their mothers, by providing the expanded physical space for a second parent to room-in and share the caregiving role.
Instead of curtains, each room is sealed off with sliding, soundproof glass doors; expansive couches transition into double beds even a tall person can stretch out on. Lighting can be dimmed and privacy can be had by closing off a set of sliding screens. Ensuite bathrooms are finished with the same kind of elegant tile one might find in a trendy hotel.

A light imitating daylight is seen in a suite at the NICU.
DARREN CALABRESE/THE GLOBE AND MAIL

Many that have stayed at NICU North have been impressed by its good looks, but more than that, they have taken comfort in being able to live together as a family at one of the toughest junctures of life.
“This is a place nobody really wants to spend any time,” said Ms. Bishop, the unit’s manager. “There’s this image that you deliver your baby, everything goes perfectly and you get to go home in a day,” she said, adding: “Nobody banks on having to be in a neonatal intensive care unit for a week or more.”
The IWK offers the highest level of pediatric care for patients in Nova Scotia and PEI; about 20 per cent of inpatients are from out of town or province, including Andy Adams and Ms. McCardle, who have lived in Paizlee’s room at the hospital for the better part of two months. For many families, staying at the hospital removes the dual financial and physical burdens of having to find a long-term place to stay in Halifax.
On a recent night, Ms. Bishop said she counted 17 families sleeping-over in 18 occupied rooms. That included Paizlee, Mr. Adams and Ms. McCardle, who have added their own bedding, two stuffed animals and a stack of James Patterson paperbacks.
“To be able to walk those corridors and see the beds made up with beautiful quilts from home … this is something we would never have seen before,” Ms. Bishop said. “People had said to us, ‘You’re not Norway. You’re not Sweden. The trucker from Cape Breton isn’t going to stay in the NICU,’ ” she said. “But people are staying. We built it. And they came.”

Emily McCardle sits on a pull-out double bed in their suite as Andy Adams smiles, holding Paizlee.
DARREN CALABRESE/THE GLOBE AND MAIL

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