After her baby's death, a mother in West Virginia is motivated to join the growing movement to share breast milk, especially to help babies born prematurely
November 18, 2012 10:00 AM
Heidi Solomon created a detailed scrapbook of her journey to donate 1,300 ounces of breast milk after her son's death.
Heidi Solomon, 30, holds plaster casts of her son Jonah's feet at her home in Morgantown, W.Va. Jonah died when he was 2 days old after being born prematurely. Ms. Solomon continued to pump her breast milk after his death and donated the milk to other premature babies and their mothers.
By Anya Sostek Pittsburgh Post-Gazette
For years, Heidi Solomon and her husband tried to have a baby. For just over five months, Ms. Solomon was pregnant. And for just two days, Jonah Solomon survived.
Their bright and tidy Morgantown., W.Va., home is filled with mementos of Jonah -- a yellow- and blue-striped hospital cap, a wallet-sized diaper, a cast of feet narrower than fingernails.
And then, there's what's not there anymore: more than 1,300 ounces of breast milk that Ms. Solomon pumped after the death of her son -- for three months, every four hours, around the clock -- and donated to other premature babies.
"If I couldn't have it," she said, "I felt like there must be other babies in need who could."
Breast milk donation has increased dramatically in recent years -- 2.2 million ounces of milk were distributed by North American milk banks in 2011, up 25 percent from just two years prior. But there is still an "acute shortage" of donated breast milk, which is used in hospitals for preemies and other sick babies.
Earlier this year, the American Academy of Pediatrics recommended that donor milk be used as the standard of care for all babies in neonatal intensive care units if their own mother's milk is unavailable. More than 250 U.S. cities now have hospitals that do so, but Pittsburgh is not among them, and the closest milk bank to Pittsburgh is in Columbus, Ohio.
This spring, Ms. Solomon was 25 weeks into a "perfect pregnancy" when, driving to her job as an elementary school speech therapist, something felt off. She drove instead to her doctor's office, where it was determined that she was in sudden preterm labor.
The next day, she gave birth to Jonah Henry Solomon -- at 2 pounds, 1 ounce, he was the biggest 25-weeker ever born at nearby Ruby Memorial Hospital. Doctors initially told Ms. Solomon and her husband, Deva, that he had a 90 percent chance of survival.
Ms. Solomon, a 30-year-old Altoona native, was directed to pump breast milk for him, and even before she saw her son for the first time -- his body dwarfed by his incubator, light wavy hair visible above a face hidden by sunglasses and tubes -- she had started doing so.
Though breast milk is considered to be optimal nutrition for all babies, it has particular benefits for babies born prematurely.
"The mortality is lower, the morbidity is lower and research has also shown that hospital days are shorter," said Nilima Karamchandani, medical director of the Neonatal Intensive Care Unit at West Penn Hospital.
Of particular danger to the earliest and tiniest premature babies is a stomach infection called necrotizing enterocolitis, which has a mortality rate approaching 25 percent. Babies fed breast milk are three to four times less likely to contract the disease.
Preterm babies eating breast milk often do visibly better than those on formula, said Roberta Rodocker, neonatal dietitian for the NICU at Magee-Womens Hospital of UPMC. "You can see it," she said. "We get the babies to full feeds sooner -- there are fewer infections, better tolerance, sustained growth."
Ms. Solomon had begun pumping every four hours, but Jonah never actually received any of her milk. The day after he was born, the Solomons were told that he was struggling with severe bleeding in his brain. They held him only once, to change his diaper and give him a bath before his ventilator was removed.
He died on May 14. "It was like our world was ending," Ms. Solomon said.
In the hours after his death, as Ms. Solomon herself was being discharged from the hospital, she began to deal with so many issues of staggering import. And one that was seemingly mundane: what to do with the 6 or so ounces of breast milk sitting in a hospital freezer that she had already pumped.
After a hospital lactation consultant told her to stop pumping cold turkey and that the milk had to be thrown away, she asked a family friend who happened to be a lactation consultant for a second opinion.
"Call them right now and tell them not to throw it away," said her friend, Ilana Chertok, a professor of nursing at West Virginia University. "I'll see what I can do."
By the time of the funeral, when a butterfly landed on Jonah's casket on a sunny May day, Ms. Solomon and Ms. Chertok were devising a plan.
Ms. Solomon would stop pumping gradually, to help prevent a possible breast infection. Ms. Chertok contacted the Mother's Milk Bank of Ohio and told Ms. Solomon that her breast milk was very much in demand. The composition of breast milk changes as a baby gets older, so Ms. Solomon's milk would be perfectly formulated for other premature babies.
"She got really excited," said Ms. Chertok, "and said maybe I can do this a little more on a low-level basis."
Milk banking on the rise
Milk banks have been around since the early 1900s in some capacity, though milk banking nearly disappeared after the emergence of AIDS because of the risk of HIV transmission. There are now 13 milk banks in North America, with six more planned sites, said Jean Drulis, president of the Human Milk Banking Association of North America.
The milk banks screen potential donors, collect and pasteurize the milk and distribute it to hospitals. Earlier this month, the banking association put out an "emergency call for donations."
Donor milk is not used in any of the three Pittsburgh NICUs, nor is it used at Ruby Memorial Hospital in Morgantown, where Jonah was born.
"We're very close to doing it," said West Penn's Dr. Karamchandani. The hospital has written policies ready but still needs to secure a freezer. The cost of breast milk (milk banks charge about $4.50 per ounce to cover processing fees) and the fact that it is not covered by Highmark or other insurance companies is also a stumbling block, she said. Magee is also looking into accepting donor milk.
At Children's Hospital of Philadelphia, donor milk has been the standard of care since 2006, said Diane Spatz, a nursing professor at the University of Pennsylvania who runs the hospital's Human Milk Management Center. CHOP also has an active milk donation program, shipping about 500 ounces a week to the Mother's Milk Bank of Ohio to be pasteurized, and hopes to build a pasteurizer to process its milk in-house next year.
Even without insurance coverage, cost should not be an issue for NICUs, she said, noting that the smallest, neediest babies might drink only just over an ounce of milk per day. To the extent that donor milk reduces the need for babies to rely on intravenous nutrition, which costs $1,000 per bag, it can actually be cost effective, she said.
The pool of potential milk donors is fairly small: currently breastfeeding women with milk to spare who are aware that donation is even an option. Milk donors must answer questions in a phone interview similar to those for blood donation, have their blood screened, have their doctor and pediatrician fill out forms and must adhere to certain procedures, such as not drinking alcohol in the 12 hours prior to pumping milk.
Milk banks often have minimum donation amounts to make processing the milk worthwhile. The Mother's Milk Bank of Ohio, the closest such bank to Pittsburgh, has a 200-ounce minimum, though that requirement is waived for bereaved mothers.
Around the clock
Although Ms. Solomon had initially planned to scale back her pumping, she continued to pump every four hours until she got her formal approval from the milk bank, and afterward as well.
"It gave me a focus, something to spend my time doing other than sitting here crying and feeling sorry for myself," she said, sitting at her kitchen table, butterflies hanging in the windows and family photos nestled among potted houseplants. "It was a way to stay connected. Even though he wasn't alive, I could still be connected to him."
She borrowed a portable pump from a friend, which became her trusty summer accessory. She pumped in the car, pumped in a boat, pumped in the sand at Bethany Beach, Del., pumped at Arts Fest at Penn State. When severe storms in late June knocked out power to her house for a week, she frantically moved all the breast milk to a friend's house to keep it frozen.
She woke up multiple times overnight to stick to the schedule. "If Jonah were alive, I'd be getting up in the middle of the night anyway," she'd say to herself. "The least I could do is to get out of bed."
Her husband, a 28-year-old attorney who grew up in nearby Fairmont, was fully supportive, even doing the tedious job of washing and sterilizing the parts of her pump.
She stopped pumping in August, in part because the school year was starting soon and in part to get her body ready to get pregnant again. But stopping wasn't easy.
"I thought, 'This is my only connection to him besides pictures. If I stop, I'm going to lose that connection,' " she said. "I did this for as long as I could, but at some point I had to move on."
In August, she lined up all the milk that she'd pumped -- about 1,300 ounces -- to ship to Columbus. Towers of circular canisters stood four deep, running the entirety of her kitchen counter. The two coolers of milk at FedEx weighed in at 36 pounds.
Because she was pregnant at the same time as half a dozen of her friends, she also gave milk to a few of them who couldn't breast-feed or were struggling to make enough to feed their babies. A detailed scrapbook she's made about Jonah has pictures of Ms. Solomon cradling three of her friends' babies while bottle feeding them her milk.
"It helped me, but feeding those babies was bittersweet," she said, describing physically feeding milk meant for her own son to another baby.
She wrote a note about pumping and donating milk on her Facebook page and last month shared that note on a site called Faces of Loss, Faces of Hope, about infant loss. It was featured on Facebook as part of World Milk Sharing Week. It has since received more than 3,000 likes and 500 comments.
What's been most satisfying to Ms. Solomon is that she's heard from mothers whose NICU babies received donor milk, "almost like a personal thanks."
Her motivation in sharing her experience is for other mothers -- and hospital personnel -- to know that the option is out there. She knows that pumping after a loss isn't for everyone, but she hopes that for other people, it might be as therapeutic as it was for her. (She recently wrote about her experience for the website Faces of Loss, Faces of Hope.)
"If you think about the babies who have had Jonah's milk, they're living because of him."
One of Ms. Solomon's favorite mementos of Jonah is a simple wooden box with plaster casts inside of Jonah's tiny feet. She decorated the box with a quotation sent to her by a friend: "There is no foot too small that it cannot leave an imprint on this world."