Wednesday, August 25, 2010

Mother Loses Baby, Donates Breastmilk to Another NICU Baby

By Alan Bavley of the Kansas City Star
posted with permission


Photo Credit: Allison Long/Kansas City Star
Four-month-old Max Robinson was strong enough to leave Overland Park Regional Medical Center on Tuesday. His mother, Jennifer Robinson (left), was joined by Nicole Hendrix, whose donation of breast milk gave strength to Max.


As she was getting ready to leave the hospital last week with her baby, a tearful Jennifer Robinson knew how to measure generosity. All she had to do was turn and look at Nicole Hendrix, the woman who had helped the premature baby, Max, to thrive against the odds.

Hendrix had donated her breast milk—gallons of it—to Max after his mother couldn’t make any more. It was a personal gift the hospital had never seen before.

Hendrix had been saving frozen milk for her own preemie daughter, Lillian. Lilli, as she was called, passed away before she could get much more than a little of it.

After multiple surgeries and four anxious months in intensive care, Max finally was healthy enough to leave Overland Park Regional Medical Center in Overland Park, Kansas. He weighed in at a substantial 8 pounds, 13 ounces. Hendrix was there to see him off. “It makes me feel that something good can come out of something bad,” she said.

Robinson said she was overwhelmed by Hendrix’s generosity. “With so much going on with their lives they would think of us,” the Olathe, Kansas, woman said. “It was like they gave him an organ, something that could save his life.”

Overland Park Regional neonatologist Kathleen Weatherstone said the donation played a role in keeping Max alive. Max was born on April 16, four months premature. Lillian was born March 4, also four months early. Both babies suffered from a condition called necrotizing enterocolitis, where blood circulation was cut off to portions of their bowel. It occurs most commonly among extremely premature infants.

Breast milk is believed to be protective against necrotizing enterocolitis
, Weatherstone said. And it’s the best-tolerated milk for infants recovering from the condition.

Often it’s difficult, though, for mothers of preemies to give their babies milk. Either their body isn’t ready to produce milk or the stress of dealing with a critically ill child keeps the milk from flowing. [More on induced lactation for preemie or adopted babies here.]

At first, Robinson, 41, was able to provide Max with breastmilk. She had breastfed her two other children. But she soon began to run dry. “It was really frustrating,” Robinson said. “As a mom, breastmilk was one of the only things I could give him to help him.”

Robinson searched for breastmilk banks that provide babies with milk from donor mothers. But insurance plans don’t always cover the charges. She calculated that it could cost thousands of dollars per month.

That’s when Robinson and Hendrix’s stories began to intertwine.

Every three hours, every day - at home, at work, even at church - Hendrix had been faithfully pumping her breast milk and freezing it, anticipating the day when Lillian would need it. “The nurses every day said to keep going,” Hendrix, 29, said. “It wasn’t fun, but I did it.”

For 10 weeks, she saved her milk. So much milk that the Hendrixes had to buy a freezer to keep in the garage of their Kansas City home.

But physicians said that Lillian’s persistent medical problems gave her few opportunities to take any of her mother’s milk. Her condition became so serious she had to be transferred to the University of Kansas Hospital in Kansas City, Kansas, where she passed away in May. [DrMomma's Note: Not giving mother's milk to premature babies may be one of the gravest mistakes we make today in some NICUs. Many hospitals have moved to a 100% breastmilk NICU policy - all preemies get human milk. And nothing could benefit them more than being skin-to-skin on mom (kangaroo care), even while hooked up to necessary equipment, and receiving mother's milk in whatever way it can be given. Additional thoughts on this subject from Emma Kwasnica here.]

After Lillian’s passing, Hendrix went back to Overland Park Regional to pick up things left behind. She thought of the breastmilk at home in the freezer. “It would have made me sick to throw it out,” she said.

Hendrix asked a nurse in the intensive care unit if she could donate her milk. Word got back to the nurse that Robinson’s baby needed breast milk, and the nurse told Hendrix. “This was a no-brainer,” Hendrix said. “I feel I would have regretted it if I didn’t. I feel I’ve given meaning to my daughter’s life, if this can help save Max.”

The hospital had never arranged to have a mother donate milk to one of its patients. Doctors insisted that Hendrix be tested for HIV, hepatitis, and other infections before Max could have her milk. [DrMomma's Note: I would consider giving my newborn human milk from a mother with an infection before I gave drastically sub par artificial formulas. It is a myth that mothers with HIV or a variety of other infections should not nurse their own babies, and more research needs to be done in this area. The hospital's insistence on testing is more a CYA practice (to avoid lawsuit should something potentially happen) than anything else.]

When Hendrix turned the milk over to Robinson, it filled a large rolling cooler and three small plastic foam coolers. Robinson brought plastic bags of frozen milk to the hospital for the nurses to defrost and give to Max.

Before sharing the milk, the Robinsons and Hendrixes barely knew each other. Hendrix recalls that she and her husband, Shannon, ran into Robinson and her husband, Troy, in the parents’ room at the hospital. “They were worried and we were listening,” she said. “Their son was going through a lot of what we went through.”

Now the families have become friends. Hendrix visited Max several times in the hospital and was one of the first people to get to hold him. “We instantly felt we had a connection,” Robinson said. “If it weren’t for Lilli, Max would not be here. Her little life made a huge impact on his. Someday, he’ll know about Lilli and how selfless her mother was.

Read, The Premature Baby Book: Everything You Need to Know About Your Premature Baby from Birth to Age One, for helpful information on gently caring for premature babies.

For more on mother-to-mother milk sharing, see the Breastmilk Donation page, or find an Eats On Feets chapter near you.

Helpful related books, sites, and articles at the Breastfeeding Resources page


8lb, 13oz Max in his mother's arms ready to go home.

16 comments:

  1. That an inspirational story. It brought tears to my eyes to hear what a loss the Hendrix's endeared, but she did what was best. Best of luck Max.

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  2. tears! What selflessness! Bravo!

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  3. I love seeing this story circulating the internet! Both of these mothers are so incredibly strong! I am so glad they are getting attention for this and able to show that breast milk and donor milk save lives, especially in very premature infants!

    I am in the process of doing something similar. I went into labor at 14 weeks with my son, and he was born way way too early so passed away. A few days later my milk came in, and right now I am pumping and storing this milk to donate to a mother I found with a premature baby because she is unable to make enough milk for him.

    Donor milk is so precious, and more people need to have the option of receiving it if they either can't breastfeed or have issues with supply. Such an incredible gift to give to a baby that needs it more than anything :)

    Thank you for sharing this story on your site!!

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  4. Wow, what an amazing, inspirational story. I donated milk to the hospital for preemies and had the pleasure of meeting some of the babies that received my milk. But I had a healthy baby at home, I can't imagine how it would have felt otherwise. I take my hat off to these moms.

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  5. What an amazing gift. To have just lost her own daughter, and not want to waste all the precious breastmilk, and donate it is just... I have no words strong enough.
    Ms Hendrix is an angel on earth, and Lili is surely watching down on her Mummy from heaven with pride.

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  6. I love this story!
    I wish more hospitals were open to breastmilk donation. When my twins were in NICU last year, I pumped an outrageous amount of milk, enough to supply them and probably two other babies. There was another mom at the Ronald McDonald House that was having a hard time producing, and really wanted her daughter to have breastmilk. I offered to donate some of mine to her if the hospital would let me, but they wouldn't, even with testing. More hospitals should be willing to work with mothers who have extra and want to donate to mothers that don't have enough.

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  7. Thanks for sharing this story. After I lost my baby, my LLL Leader and friend connected me to the mother of a 7 week old adopted baby boy by the same name as my daughter. I ended up donating 450 oz.

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  8. Here is more info on mothers with HIV and breastfeeding....

    http://www.anotherlook.org/index.php

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  9. in a world so full of selfishness its lovely o hear such a selfless story. brought tears to my eyes, just so wonderful!!

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  10. I have a newborn daughter named Lillian. She spent three months in the NICU with various medical conditions (she's not a preemie). To hear of another mama doing this... it touches my heart.

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  11. This has me in tears. As a mother who has a child and who is a strong lactivist the milk donation aspect is amazing. But I also recognize the look on that mother's face. Losing a child and then being in the room with someone else's baby is so hard. And still being able to, through your grief, donate milk. I'm sure it was healing for them but still very difficult. What an amazing amazing mother. I hope she is blessed with a miracle.

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  12. I wish I had known to try to donate directly to another mother after I lost my daughter. She died after 6 weeks in the NICU and I had a freezer full of milk. I finally found a milk bank in another state that would take it for "research purposes"--because I had been taking a galactagogue to keep it going they wouldn't give it to another baby.

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  13. God Bless this wonderful woman. Not many would be so willing to think of others in a time like this. We need more people like this in the world.

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  14. God bless Nicole Hendrix, i have been in her shoes. i only wish i could meet the babies who may have been helped by my donation. i'm sure it is hard for her to be around someone else's baby, but i'm sure it's also so fulfilling to know her loss kept someone else from experiencing the same pain. i know i cried tears of joy when i got the acceptance letter from the milk bank. all i could think is "maybe another mom won't have to go through this, my daugther is to thank for that."

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  15. [DrMomma's Note: Not giving mother's milk to premature babies may be one of the gravest mistakes we make today in some NICUs. Many hospitals have moved to a 100% breastmilk NICU policy - all preemies get human milk. And nothing could benefit them more than being skin-to-skin on mom (kangaroo care), even while hooked up to necessary equipment, and receiving mother's milk in whatever way it can be given. Additional thoughts on this subject from Emma Kwasnica here.]

    I had a micropreemie who had many many many illnesses including NEC. I just wanted to point out that when a preemie has NEC or concerned about NEC the first thing they do is stop feeds even if it is breastmilk. They put the entire bowel on rest and put this large tube down into their stomach to suck out all secretions so the bowel will rest. Breastmilk is great for preemies and the best medicine with the super charged antibodies and the high fat count but some micropreemies are too sick to even have breastmilk. Some babies are too sick to even hold or touch because they just are not stable enough. When my son was in congestive heart failure all he could not receive my milk nor could we touch him, all we could do was talk to him quietly and pray.

    It was a hugely sacrificial gift of any preemie mom to donate their milk after their baby has passed. What a good woman.

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  16. It is so, so sad and tragic to lose a baby of any age. As this mom highlighted, though, often even when NICU workers tell you a baby is 'too weak' to touch or hold, that is JUST what the baby needs most - to be close, skin to skin, on his mom. There are so many stories like this one - where a baby was saved because his mother stepped in and took over when all other medical interventions were failing.

    http://www.drmomma.org/2011/03/when-doctors-lost-all-hope-mothers-love.html

    My heart goes out to all parents who have lost a baby.

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