the bundle: April 2009

I read this article last month and recently came across it again...an amazing must read for all you mothers out there!

"Even when Lynn Page felt she'd lost everything, she still had something invaluable to give. Bonnie Rochman tells the story of a mother's devotion and the little-known network of medical miracle workers that's quietly helping the babies who need help most.Lynn Page was 37, and a pediatric psychologist—old enough for things to go badly with her pregnancy and informed enough to know it. So during her first ultrasound, when the doctor's face suddenly fell and he told her she could get dressed, her heart was hammering as she asked, "What's wrong?" This was November 2006. Lynn was alone at the appointment. She and her husband, Chris, live in Norfolk, Virginia, but Chris, a 19-year navy man and chief petty officer on the submarine USS Boise, was underwater somewhere in the Pacific. When Lynn had learned she was expecting, she'd sent off a package to his next port, in Japan: licorice, M&M's, and a dad's guide to pregnancy called My Boys Can Swim! If the doctor was about to give her horrible news, she wanted Chris with her. But the doctor surprised her. "There's nothing wrong," he said. "There's just three."Three! Lynn didn't know what to say. Triplets was a possibility she'd never considered. Twins, sure; she's a twin herself, and there were others in her family, on both sides. No one in her family had ever given birth to triplets, though. As the doctor began describing how hard it would be to carry three babies in one body, Lynn tried to keep her shock from turning to panic. There was scant hope that she would carry a full 40 weeks. Triplets are more likely to be delivered around 32 weeks and are at greater risk for serious health complications. Despite the risks, though, Lynn and Chris convinced themselves that everything would be all right. Maybe it was a necessary defense mechanism, or maybe willful naïveté, but they decided to be optimistic. In mid-February, the navy sent Chris home to be with Lynn. Lynn started shopping, cautiously picking out onesies. And at an appointment on March 5, when she was just past 20 weeks, it seemed their optimism was well-founded. "You're doing great," the doctor said. But before two weeks had passed, Lynn began having back pain. She went straight to Portsmouth Naval Medical Center, where she discovered that the pain was actually contractions. Five days later, on March 22, 2007, her water broke. She was 23 weeks pregnant, barely halfway there.Seth and Rowan, brother and sister, were born first. Within 24 hours, both died, of "extreme prematurity," yet Lynn and Chris hardly had time to grieve. They had a third baby—Reese Magdelyn—to worry about. In her work, Lynn treated children with serious medical conditions, and had often counseled families whose infants had landed in neonatal intensive care units. She had helped parents deal with the stress, the high highs and low lows. It was different when it was your own child, though.

Reese weighed 1 pound, 4 ounces. Head to toe, she measured just over 11 inches. Her arms were the circumference of a tube of penne pasta. When Lynn was released from the hospital on March 23, Reese stayed. When Lynn went back to work on April 2, Reese was still there. The Pages had no idea when they'd be able to bring their daughter home to their little white house with its green shutters and picket fence.When a baby is born so early, there isn't much a parent can do—a truth that Lynn relearned each day when she went to the hospital to sit beside Reese. She couldn't pick her up. She couldn't rock her and cup her head in the palm of her hand. She couldn't kiss her forehead or whisper in her ear. She couldn't cradle her to her chest and feed her. But she could make sure that the milk her body was making would be ready and waiting for Reese to be fed.From the moment she learned she was carrying triplets, Lynn knew there was a good chance the babies would have to fight for their lives. And she knew she could increase their odds by breastfeeding. Reese wasn't strong enough to nurse now, but the doctors believed she would be someday. So from the day Reese was born, Lynn began pumping breast milk. Wherever she went, she lugged her pump; it was like another appendage. A woman who pumps is said to be expressing her milk. For Lynn, it was one of the few physical ways she could express her love.Though about 74 percent of American mothers start off breastfeeding, only about 12 percent are still nursing exclusively by the time their child is six months old, despite position statements from every major pediatric, family health, and public health organization that babies do best if they're fed only breast milk for six months and continue to nurse until at least their first birthday.Human milk for human babies—that's how lactation experts sum it up. Although babies can and do thrive on formula, most formula is derived from cow's milk, and then—to make it resemble the composition of human milk—augmented with corn syrup, sugar, vitamins, minerals, and vegetable oils. But no amount of laboratory tinkering has yielded a way to infuse formula with the unique and potent cocktail of hormones, human growth factors, digestive enzymes, and antibodies that human milk conveys.Because breast milk is composed of white blood cells that fight infection and stimulate the immune system, babies who receive human milk gain extra protection against illnesses such as pneumonia and staph infections. Premature babies in particular, prone as they are to infection, benefit from breast milk's immunological properties. Breastfed babies have fewer ear and respiratory tract infections, and less diarrhea. Studies indicate that they're less likely to get certain childhood cancers. They have a lower risk of developing diabetes, allergies, and possibly heart disease later in life. Some research even suggests that they can wind up with higher IQs.When it works, human lactation is as automatic and easy as breathing, yet it's a finely calibrated physiological feat. The milk that a new mother produces in the first days after giving birth—a thick, protein-packed substance called colostrum—is typically present from about the fourth month of pregnancy. About three days after delivery, colostrum transitions to mature milk, which is higher in water, lactose, and fat content. And over the course of every subsequent feeding, that milk will transform itself again and again: At the start of each meal, it will be thin and watery; by the end, it will be rich and creamy. One more neat trick: As soon as the milk glands empty, the body gets to work refilling them. Demand creates supply—and the body doesn't care at all if a machine is the thing doing the demanding.

Still, pumping your breasts is nothing like nursing. Instead of the tug of a baby's mouth, there is strong mechanical suction from two plastic cones that screw onto plastic bottles. When you nurse, the warmth of the baby tucked against you, skin to skin, stimulates the release of the feel-good hormone oxytocin, which helps trigger milk flow. When you pump, all you get is the whine and wheeze of a motor.Reese had arrived so early that Lynn hadn't even unpacked her pump from its box. While she set it up the first time, Chris had to read her the instructions. Within the first weeks of her daughter's life, though, she fell into a routine. Every day, every three or four hours around the clock, at home, at the hospital, at work, Lynn pumped for Reese. Without the aid of a crying baby to rouse her, without even needing an alarm clock, she woke every night at 2 a.m. to sit and pump in the old-fashioned upholstered wing chair that had belonged to Chris's grandmother. In the still of the night, she'd phone the hospital. Always the same question: "How's Reese doing?" The nurses knew to expect her call. Even though breast milk is easy to digest, Reese was so premature that her stomach couldn't handle it. Instead, she was given, intravenously, a liquid that looks like yellow Kool-Aid and contains carbohydrates, electrolytes, protein, fats, vitamins, and minerals. Only on rare occasions were the nurses able to give her tiny amounts of Lynn's milk, through a tube inserted directly into her stomach or intestines. When she was a month old, Reese developed necrotizing enterocolitis—a condition that causes portions of the intestines to die—and underwent surgery to remove withered sections of her intestine. But as the weeks passed after the surgery, she began getting stronger. When she was 2 months old and weighed 3 pounds, Lynn got to hold her for the first time. By June she had gained more weight. She was looking at her toys and using her pacifier and figuring out how to keep the doctors in line. When they came to do a procedure, she'd make as if to cry, then relax when they backed off. The doctor who'd once called her a little pistol was right.All the while, Lynn kept pumping, stockpiling her milk for the day when Reese would be strong enough to digest it. Get up, shower, pump. Eat breakfast, go to work, pump. Head to the hospital, see Reese, pump. The more, the better. It was a gift for her daughter, but it helped Lynn too. It was a way to prepare for the future, for when Reese would come home. She had already passed a billion hurdles; it was just a matter of being patient. At the hospital, there were two pumping rooms near the intensive care nursery: the lavender room and the yellow room. Both were furnished with gliders that moved back and forth in a soothing one-two beat. Lynn would sink into a glider, thumb through parenting magazines, think about Reese, and pump. The nurses were incredulous. They'd never seen a woman pump so much for so long. One day a lactation consultant mentioned that with so much milk, Lynn might consider donating some. Donating? Lynn barely paid attention. Why would she donate her milk? Reese would need every drop of it herself someday soon.

The concept of sharing mothers' milk is hardly new. Throughout most of history, wet nurses filled in for mothers who couldn't breastfeed or who chose not to. (The prophet Muhammad had a wet nurse. So did Napoleon, Alice Roosevelt, and Luciano Pavarotti. After the future King George IV was born, in 1762, his wet nurse, Mrs. Scott, became a minor celebrity.) In the United States, the practice of using surrogate nursers died out in the early 1900s, when formula became popular. But even then doctors were aware that breastfed babies were hardier than those who got formula. In 1911, a Boston physician opened a facility where poor mothers who were nursing their own babies were paid to pump milk for other infants. It was, effectively, the country's first human milk bank. By the 1980s, there were about 30 milk banks in the United States, all of them not-for-profit. The banks were the answer for mothers whose health issues (prior breast surgery, diabetes, pituitary gland or thyroid problems) hindered milk production, or whose milk had been tainted by medical treatments. They were ideal for mothers whose milk supply was stifled by the stress of premature birth. Then AIDS arrived, and suddenly bodily fluids were terrifying. The AIDS virus was deadly, and it could be transmitted through breast milk. Milk banks started closing; before long, fewer than 10 remained. In 1985, the Human Milk Banking Association of North America (HMBANA) was founded to establish safety standards for processing donor milk, and before long, all the banks that had stayed open were doing what dairy farmers had been doing for decades: pasteurizing. The process kills bacteria and viruses, and that safeguard, coupled with scores of scientific studies affirming the benefits of breast milk, reinvigorated interest in donor milk banking. Today HMBANA comprises 10 nonprofit banks in the United States (and one in Vancouver), each primarily serving a designated section of the country. In 2007 these banks distributed nearly 1.2 million ounces of milk—both to hospitals and to women like Sheila Reigner, in Pennsylvania, who can't nurse because she's undergoing chemotherapy for breast cancer, and Marianna Manley, in Indiana, who can't produce enough milk for her quintuplets. That 1.2 million ounces is roughly double the amount the banks were distributing a decade ago, and as more hospitals embrace donor milk, demand is bound to keep increasing. Each year approximately 60,000 VLBW babies (very low birthweight—less than 1,500 grams) are born in the United States, and on average, some 51,000 survive. These are exactly the babies who stand to benefit most from breast milk.Yet Audelio Rivera, MD, president of the Mothers' Milk Bank at Austin, has prepared a mathematical model showing that if every surviving baby were given breast milk, milk banks would need to supply more than 8.9 million ounces to compensate for what the babies' mothers couldn't provide themselves. To collect that much milk, banks would likely have to do extensive outreach; today they operate quietly, with little or no marketing budgets. Few people know of their existence; even those in the business of caring for critically ill infants aren't necessarily aware that this resource is out there. Soon after her baby died at a North Carolina hospital, a woman named Nancy Woodyard returned to collect the milk she'd pumped and take it to a milk bank—only to find that someone on staff had thrown it away.

Every ounce of milk Lynn pumped was another ounce she and Chris had to safely store. After they filled their kitchen freezer, they invested in a chest freezer. After that was full, they commandeered the freezer of Chris's old friend Matt, who'd been best man at their wedding. After that was full, they went on Craigslist and found an upright freezer, its sides dented and its beige paint chipped but its motor intact. When the woman selling it heard what it was to be used for, she dropped the price from $25 to $20. Sold.Meanwhile, Reese seemed to be doing better. At the end of June, her breathing tube was removed, and suddenly Lynn was able to hold her every day. Reese smiled. And cried. Without the breathing tube blocking the sound, Lynn and Chris finally got to hear her cry. But two weeks after the tube came out, it had to go back in as Reese began getting weaker.Still, the milk kept coming. Though Lynn poured some into ice cube trays, most went into two-ounce containers she and Chris had once used to serve Jell-O shots at a party. They'd bought the containers at Costco, where the smallest quantity available was 2,000. They figured they'd never use them all. Now they were running out. On weekdays, two nurses and a technician work in the WakeMed Mothers' Milk Bank in Raleigh, North Carolina. Crammed into 650 square feet of space, the bank is attached to the department of neonatology on the third floor of a nondescript seven-story brick and glass structure, the main building on the WakeMed hospital system's main campus. With two rooms the size of walk-in closets (one a tiny lab where milk is pasteurized; the other, a storage area where it's kept frozen), and a slightly larger administrative space that was carved out of physician sleeping quarters, the bank manages to serve the entire East Coast, from Maine to Florida and west to Tennessee. When frozen donor milk arrives via an overnight FedEx flight, it's quickly unpacked and sorted according to the month it was pumped (frozen breast milk is good for up to a year), then returned to a freezer to await processing. When a technician is ready to pasteurize a batch, she selects milk from three to five mothers (the milk is mixed to balance its nutritional profile). In the lab, the milk is thawed, mingled in a flask, and cultured for bacteria. It's poured into glass bottles (two-ounce containers for new preemies, eight-ounce for older babies), then pasteurized in a water bath for 30 minutes at about 145 degrees Fahrenheit, a process that kills any bad things that may be lurking in the milk while retaining most of the good ones. Next, the bottles are plunged into an ice bath, another culture is taken, and the bottles are sealed and placed in a holding freezer until the cultures have returned from the hospital lab. If the milk is "clean," it's moved into the dispensing freezer, where it might sit for a day to a week, depending on demand.Each bottle of milk is labeled with a batch number. Each batch is keyed to a record of which donors contributed. (For legal purposes, records are kept for 21 years, though there has never been a lawsuit involving donor breast milk.)Although the banks are not-for-profit, they charge recipients up to $4.50 an ounce, to cover costs. Those costs begin with donor screening; at WakeMed, potential donors are first interviewed by phone, then asked to complete a 49-part questionnaire. Question 5: In the past five years, have you ever used recreational drugs such as marijuana, cocaine, LSD, ecstasy, or amphetamines? Question 7: Please describe your daily intake of caffeine. Question 21: Have you had an accidental needle stick or exposure to someone's blood? The banks also cover the cost of donor blood tests, the cost of processing and storing the milk, and the cost of shipping it (which involves dry ice, Styrofoam, and cardboard boxes or coolers labeled HUMAN DONOR MILK).

At any given time, the WakeMed bank has about 135 donors. Most are mothers of healthy infants who happen to have an abundance of milk. But some are mothers whose babies have died, and for these women, donating breast milk can be therapeutic. Giving away their babies' milk so another infant might survive can help a grieving mother make some sense of catastrophe.On October 11, 2007, Lynn made her usual 2 a.m. phone call. Reese's lungs had always been compromised due to her extreme prematurity, but more recently, things had gotten worse. Her liver had become enlarged and begun to press on her lungs, which made it hard for them to expand, which made it hard for her to breathe properly, which made it hard for oxygen to get to her heart. That night, though, she seemed to be holding steady. Everything is fine, the nurse reported. Reassured, Lynn finished pumping, climbed back into bed, and curled up against Chris. A couple of hours later, the telephone jolted them awake. "We need you to come in," a nurse said. Reese's heart rate had slowed so dangerously that doctors had had to resuscitate her. She'd survived six and a half months after the death of her brother and sister, but now her system was collapsing. At the hospital, the attending doctor told Lynn and Chris there was nothing more anyone could do. Lynn and Chris talked it over. They decided they wouldn't withdraw treatment but wouldn't ask for heroic measures, either. As Chris went to tell the doctor, Lynn glanced up at the heart monitor just in time to see the numbers drop again. At 6:30 a.m., Reese died in Lynn's arms, with Chris by her side. "We let her go," is how Lynn still thinks of it today.Reese had lived 203 days, every one of them in the hospital. Lynn had gotten to hold her maybe two dozen times. Now she and Chris stayed with her, holding her once more. For the first time, there were no wires or monitors or IV lines.By 9 a.m., Lynn's breasts were throbbing, painfully full. She'd skipped her early morning pumping session to be with Reese, and now Reese was gone, and still, here was this milk, this force of life that wouldn't be denied. "I need to pump," she said, even though it seemed surreal. She headed for one of the pumping rooms, sat down in the nursing glider, and let the milk come.Later that day, back at home, she and Chris would sit and stare at each other. They would make arrangements to cremate Reese, as they'd done with Seth and Rowan, not wanting to leave their babies behind should the navy ever decide to transfer Chris. After Seth and Rowan died, Lynn had found tiny porcelain urns in the shape of baby shoes, laced with satin ribbon and sprinkled with a delicate floral pattern across the toe. They would have to order another shoe, for Reese.But for now, Lynn pumped. And at some point she turned, overwhelmed, to a nurse. "What am I going to do with all this milk?"

Premature babies aren't the only humans who stand to gain from breast milk. Children with severe allergies, people recovering from organ transplants, and patients with autoimmune diseases sometimes drink donor milk because its proteins, fats, and carbohydrates are easily tolerated and its immunological properties help protect against infection.Research suggests that breast milk may even have the potential to kill cancer cells. Several studies in Europe and Asia have investigated a complex called HAMLET—an acronym for human alpha-lactalbumin made lethal to tumor cells—that's found in human milk. In the mid-1990s, Swedish researchers discovered that purified HAMLET, when mixed with cultures that contained either healthy or cancerous cells, destroyed the tumor cells but left the healthy cells unharmed. A preliminary human study—involving fewer than a dozen bladder cancer patients who were injected with HAMLET—showed promising results, though there's no evidence to suggest that simply drinking breast milk can kill tumor cells. Nevertheless, some adults with cancer have used it as part of their disease-fighting regimen.Although milk banks would love to provide milk to every person that would benefit, donors are ultimately the ones controlling the supply. One month, stores may be up on the West Coast and lagging far behind on the East Coast; the next month, the opposite may be true. The banks serve as backup for one another. When one is low, a group e-mail will go out: "Got milk?" Milk bank administrators are routinely forced to triage, which they do following HMBANA guidelines.Desperately sick premature infants, it is agreed, need donor milk more than healthy full-term babies. Babies, in general, stand to benefit more than toddlers. But as is the case with most any set of guidelines, there is room for interpretation. In California, Wesley Forslund-Mooers was suddenly left without a source of breast milk after a stroke killed his mother when he was only 3 days old. He was a perfectly healthy baby—you could argue that he didn't need the milk—but no one at the donor bank in San Jose was going to refuse him. The day after Reese died, Lynn called WakeMed Mothers' Milk Bank."We lost our daughter," she told Sue Evans, the lactation consultant who answered the phone. "We've got a lot of milk." "We'd love to have it," Sue said. "We'll send you coolers so you can ship it."Ship it? How could they ship it? The milk was part of their connection to Reese. And there was so much of it. All those days and nights of pumping. It had to get there safely. It had to stay frozen. They couldn't ship it. They would have to deliver it themselves.It was pouring rain the morning that Lynn loaded milk into coolers. Chris wheeled the freezers out of the garage and up the ramp of a rented trailer they'd hitched to the back of their Ford Escape. It was hard work. The freezers were packed full; for weeks he'd been using phone books to weight down the chest freezer's lid. As he hooked up a generator to keep the milk frozen, he couldn't tell the difference between the rain and his sweat.They swung by their friend Matt's house to empty his freezer. Then to the hospital, where the neonatal nurses had been storing the last of the milk. Finally, with the freezers and two coolers lashed tight, they headed south to Raleigh. Two hundred miles to think about Reese.

When they arrived at WakeMed, Sue Evans met them at the portico, started opening the freezers, and said, "Oh my."Never had one family shown up with so much milk. The freezers held 7,260 ounces.It had been only two weeks since Reese died. It had hurt to pack the milk up, and now it hurt to unload it. Lynn and Chris were silent as they worked, thinking about Reese, and how she was here but now she wasn't, how it was so hard to believe that they had lost her and that they were giving away what was supposed to have been hers. They helped the nurses stack the milk on hospital carts. All those plastic bags and Costco containers and frozen bricks of opaque ivory. Some of the milk went back to the first week of Reese's life. Of the vast quantity Lynn pumped, Reese had been able to take in only about 10 ounces, less than a small coffee at Starbucks.Handing over the last bit felt like a goodbye, as if they were letting go, again, of Reese herself. Lynn was crying and the nurses were crying, and Sue Evans kept hugging her and thanking her. Sue hadn't understood why Lynn and Chris wanted to drive seven hours round-trip, but now she got it."If anyone asks," Lynn said, "tell them we did this out of love for our babies."It took four nurses three hours to catalog the milk. On the west coast of Florida, Laura Oursler gave Lynn's milk to her son, Keegan, who was born with a neurological condition that left him unable to eat normally. In Orlando, Lisa Vratanina gave Lynn's milk to her son, Thomas, whom she adopted two years ago when she was 48. In Maine, Julie and John Montemurno gave Lynn's milk to their son, Gabriel, after he was delivered by emergency C-section 10 weeks early and Julie was unable to pump.In all, Lynn's milk was sent to 16 infants, two young children, and six hospitals. It nourished a lot of babies.Last fall, at Portsmouth Naval Medical Center, where Reese spent her entire life, Lynn got ready to do it all again."Do you want the lights dimmed?" a nurse asked."I don't care.""Would you like the birth filmed?""No!""Do you want a mirror so you can watch your baby being born?""I don't think so."On November 14, at 1:04 a.m., Ashtyn Grace Page was born. She weighed 7 pounds, 6 ounces. She had her father's nose and mouth, her mother's long, graceful fingers, and a swath of black hair. She was a healthy, full-term baby.Within an hour of her birth, Ashtyn's pink O of a mouth gaped wide and latched onto her mother's breast. It was such an odd sensation, this tugging and pulling that was so foreign but so welcome. Because until then, despite pumping more than 56 gallons of milk, Lynn Page had never nursed a baby.