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Adam Wolfberg - Fragile beginnings: discoveries and triumphs in the newborn ICU

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This is a gripping medical narrative that brings readers into the complex world of newborn intensive care, where brilliant but imperfect doctors do all they can to coax life into their tiny, injured patients. Dr. Adam Wolfberg--journalist, physician specializing in high-risk pregnancies, and father to a child born weighing under two pounds--describes his daughter Larissas precipitous birth at six months, which left her tenuously hanging on to life in an incubator. Ultrasound had diagnosed a devastating hemorrhage in her brain that doctors reasoned would give her only a 50 percent chance of having a normal IQ. With the knowledge that their daughter could be severely impaired for life, Adam and his wife, Kelly, consider whether to take Larissa off life-support. As they make decisions about live-saving care in the first hours of a premature infants life, doctors and parents must grapple with profound ethical and scientific questions: Who should be saved? How aggressively should doctors try to salvage the life of a premature baby, who may be severely neurologically and physically impaired? What will that childs quality of life be like after millions of dollars are spent saving him or her? Wolfberg explores the fits and starts of physicians, government policy makers, and lawyers who have struggled over the years to figure out the best way to make these wrenching decisions. Through Larissas early hospital course and the struggle to decide what is best for her, Wolfberg examines the limitations of newborn intensive-care medicine, neuroplasticity, and decision making at the beginning of life. Featuring high-profile scientific topics and explanatory medical reporting, this is the first book to explore the profound emotional and ethical issues raised by advancing technology that allows us to save the lives of increasingly undeveloped preemies--

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Fragile Beginnings Discoveries and Triumphs in the Newborn ICU Adam - photo 1

Fragile Beginnings

Discoveries and Triumphs in the Newborn ICU

Adam Wolfberg, MD

A Harvard Health Publications Book

Beacon Press, Boston

To Kelly, whose fierce love of her family inspires all of us

Contents

Chapter 1. Fragile Beginnings

A vaulted ceiling rises five stories over the lobby of the Brigham and Womens Hospital, its skylights illuminating the entrance to one of Harvard Medical Schools flagship institutions. Approximately twenty-five times every day, a small but joyous parade descends from one of the postpartum floors and crosses the two hundred feet of polished tile that stretches from the maternity wing to the hospital entrance.

First comes an orderly pushing a wheelchair bearing a new mother who holds her swaddled newborn in her arms. Next comes another aide driving a cart piled high with flowers, cards, assorted baby gifts, and the usual infant paraphernalia: diapers, formula, a blanket, pacifiers. Last comes the beaming father, suitcase in hand, carrying whatever doesnt fit on the cart.

The procession pauses just before the revolving doors, and the father is dispatched to the parking garage. Soon the car pulls up, and the group moves out to the driveway; the new mother is lovingly strapped into the passenger seat and the baby carefully buckled into a car seat behind her. Quickly, luggage, gifts, and flowers are loaded, and the family drives away.

This is the way childbearing is supposed to happen.

Twice before, Kelly had ridden that wheelchair holding a healthy newborn. Understandably, she thought that having a child was a relatively uncomplicated affair: a couple tries to get pregnant and eventually succeeds. Nine months later, a healthy baby is born, and after a few days recuperation, they go home together.

But after Larissa was born, Kelly rode the wheelchair across the lobby alone.

January 10

Kelly steered her Ford Explorer through the slow curve as Storrow Drive swung under the Boston University Bridge and entered the stretch of highway that she liked best in the morning. Next to her, the Charles River widened, and up ahead, the sun bounced off the skyscrapers and shimmered across the ice. Behind her, three-year-old Hannah, her younger child, was cheerfully holding up her end of a conversation.

We have turtles, Mommy. We have turtles in a box, Mommy. Its my turn to feed the turtles, Mommy.

What do you feed the turtles, Hanni?

Food, Mommy.

What do turtles eat, Hanni?

They eat turtle food, Mommy.

Of course they do, Hanni. Ill bet you are very good at feeding the turtles.

Before long, they arrived at Hannahs nursery school. Parking places were in short supply, so Kelly parked in the shopping plaza across the street. She had a long mental to-do list, and as she got Hannah out of the car, she added one more itempick up some milk at the Stop & Shop before she left so she could get her ticket validated and exit for free.

Hold my hand, love. They carefully crossed two lanes of Cambridge Street, squeezing into the space on the median strip between two snowbanks. There was a break in the traffic and they dashed across to the other side.

Kelly had come to enjoy the daily trip into Boston. The buildings, the traffic, and the streets lined with restaurants, dry cleaners, and coffee shops gave her a dose of urban living that she sometimes missed amid the setback suburban homes in her neighborhood with clipped lawns now covered by un-mussed snow.

Wrapped in layers against the January weather, they made their way to Hannahs classroom. At first, Hannah clung to Kellys leg and pushed her face into Kellys coat.

Hello, Priscilla. Kelly greeted one of Hannahs favorite teachers warmly. You have another boring day planned for the children? A whole lot of sitting around?

Thats what well do today, Priscilla said, smiling. A whole lot of sitting and staring out the window. We will do our best to have no fun at all.

Hannahs face emerged. She looked up at Priscilla, then at Kelly, then back at Priscilla, and started to smile. She loosened her grip.

Want to read a book, Mommy?

You know it. They chose Guess How Much I Love You off the shelves and went to the reading area with its low couches and pillows. Awkwardly, Kelly lowered herself onto the couch. Renee, Ella, Alex, do you want to read with us? she asked some of Hannahs friends whose parents had already departed. Ella came over and sat down.

When the story about the father hare and his son was over, Hannah and Ella wandered off to the sand table.

A mother dressed in a business suit came in with her son in tow. Hi, Sarah, said Kelly, and she couldnt help comparing the womans perfectly tailored suit with the drab maternity dress from Target that she had hurriedly donned before hustling Hannah and ten-year-old Grace out the door and into the car. Between dropping Grace in front of the neighborhood elementary school and heading downtown, Kelly had managed to apply lipstick using the visor mirror, but her hair was still just hastily pulled back in a tight elastic.

Hi, Kelly, Sarah said, glancing at Kellys abdomen. You look great. Then she turned to her son and kissed him. Bye, Sammy. Mommys got to run. As she extricated herself from her sons embrace, she said to Kelly, God, I hate always rushing off. And then she waved a carefully manicured hand at Kelly with the apologetic look of a working mother on a tight schedule.

I know what you mean, Kelly started to say, but Sarah was already too far away to hear.

Kelly stayed and watched the kids for a few more minutes; when the children were called to circle time, she quietly slipped out of the classroom, made a quick stop at the supermarket, and headed to her car.

The next stop was across town at Brigham and Womens Hospital; she had a long prenatal appointment during which she would have a blood test for gestational diabetes, a common condition she had had during her pregnancy with Hannah. Kelly was twenty-six weeks along in her pregnancy, and she was pretty sure shed fail the test and be required to start the restrictive diabetic diet to control her blood-sugar levels and avoid insulin injections. She smiled as she recalled her carbohydrate binge of the previous day, which shed relished in the full knowledge that it might be her last for several months.

Kelly pulled into the parking lot, checked in at the clinic, and had her first blood sample drawn. Then she drank the super-sweet cola that challenged her bodys ability to metabolize sugar and sat down to wait exactly one hour until the next blood sample was taken. She pulled a manila folder out of her bag and began to read through the information shed printed out from the website of Boston Childrens Hospital, where she would interview the following week.

Before leaving Baltimore to move to Boston, Kelly had completed the coursework for a doctorate in psychology. As a student, she had excelled at working with children who suffered from chronic diseases such as kidney failure, cerebral palsy, and severe developmental delay. She was pleased when the best childrens hospital in Baltimore had aggressively recruited her for her required one-year internship, the last thing that stood between her and her degree. But instead of taking that coveted position, Kelly had put her own career on hold and moved to Bostonso I, her former-journalist husband who had just graduated from medical school, could do my residency in obstetrics and gynecology at Harvard-affiliated Brigham and Womens Hospital.

Our plan was working perfectlyKelly was helping our girls adjust to a new city and was pregnant with our third child during this year after our move to Boston and before her anticipated return to work. She had applied widely to internship programs in Boston and found that her success in Baltimore was opening doors in her new hometown. Leaders of the top programs in the city offered her interviews, and when the calls from internship directors eager to have her join them followed her visits to their hospitals, Kelly realized she would have her pick of jobs.

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