Booby Traps Series: Donor milk use is growing in NICUs, but not fast enough for some babies.

IMG_5586Last year a friend of mine had a baby in the U.K.  Her baby was preterm, and I was doing what I could over email to help with breastfeeding while her baby was in the NICU.

Anticipating that she might have a need for donor milk, I started mentally preparing to send her evidence she could use to argue to her providers that donor milk was necessary for her baby.  I planned to round up the studies showing that it reduces the risk of the life-threatening condition necrotizing enterocolitis (NEC) by 79% and that it’s quite cost effective.   Just one case of surgical treatment of NEC can cost roughly $200,000, and that doesn’t include lifelong problems and treatment;  a stay in the NICU can be $32,000 less if donor milk is used.

But before any of that could happen, my friend wrote that her baby had been started on donor milk.  It was offered before she even had a chance to ask for it, at no additional charge to her family.

Here in the U.S., donor milk has become the standard of care for babies under certain weight and gestational ages at some hospitals.  This means that it’s the policy of the hospital to use donor milk with these babies, and it’s a wonderful development.

And other hospitals report some use of donor milk.  A recent study found that 42% of Level III NICUs reported at least some use of donor milk, with 85% of them having begun using donor milk in the last five years.  So the trend is clearly upward.

But for babies at the estimated nearly 60% of NICUs that do not use donor milk, and for those in NICUs where it is not yet the standard of care, it’s not happening fast enough.

If you happen to have a baby at a hospital which doesn’t use donor milk, it can be extremely difficult to get it.  First, you have to know what donor milk is, and few non-parents do (and many parents don’t either!).  Then, you may need to convince a neonatologist of the safety and efficacy of donor milk – a tough task for anyone, let alone a mom who has just had a preterm baby.  The recent study on the use of donor milk in NICUs found that “lack of knowledge by medical directors of accessibility, safety, and parental receptiveness may be barriers to donor milk use.”

And worst of all, since the cost of donor milk is simply out of reach for most families, it may mean persuading a gigantic, faceless insurance company that it’s a wise use of their money.  Even neonatologists have trouble doing that; I remember hearing one describe how she could spend hours faxing studies to insurance companies in the hopes of persuading them to pay for donor milk.  This in spite of the fact that the American Academy of Pediatrics supports the use of donor milk when mothers’ own milk isn’t sufficient.

Complicating the picture are capacity problems at the milk banks.  In some sense, the milk banks, which often operate on a shoestring, hunting down grants and donations to sustain their operations, are victims of their own success.  As demand grows for donor milk, it has been very difficult for milk banks to meet it, and shortages are increasingly common.  So even if you’re able to convince everyone to get your baby started on donor milk, it’s possible that it might not be available when you need it.

The bottom line:  We know that donor milk can be lifesaving for babies.  We also know that it saves money.   But there isn’t enough to go around, YET.  According to the documentary Donor Milk (now available on Amazon.com), 8 million ounces of donor milk are needed for preemies and fragile infants, and the most that has been donated to HMBANA milk banks in one year is 1.5 million.    That’s a major shortfall; and it’s not just milk that is needed, it’s funding to sustain milk banks, too.

A few years ago I sat next to a NICU nurse at lunch table at a breastfeeding conference.  “You know,” she said, “for one year when we were using donor milk, we didn’t have a single case of NEC.  And the we stopped using donor milk and we started having cases of NEC again.”

This is what this Booby Trap looks like.  Hard as it may be to accept, this barrier is truly a matter of life and death.

Did you have trouble getting donor milk for your baby?  What barriers did you face?



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3 Comments | Last revised on 08/13/2013


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3 Responses to Booby Traps Series: Donor milk use is growing in NICUs, but not fast enough for some babies.

  1. Amy says:

    I am a foster parent for infants awaiting adoption. Some time ago I was caring for a 26 week gestation baby during his stay in the NICU. I BEGGED the team providing his care to order breastmilk for him. They were willing but Medicaid refused to pay. He ended up suffering from two NEC infections, one of which nearly killed him and which, I’m SURE, cost far more in outlay than breastmilk would have! I fought hard for him to have access to such a simple “cure”, however as a non-custodial caregiver, I was unable to persuade his team of docs to over-ride the Medicaid ruling.
    I’m so happy to see that babies today are beginning to have this option available to them. It’s also satisfying to know that I was right!
    Thank you!

  2. Pingback: NEC Society and Best for Babes launches 1st Nationwide Miracle Milk™ Mother’s Day Stroll to Save Lives | NECsociety

  3. Cathie says:

    Long before I had the opportunity to be a mom I saw parents standing in a NICU watching over their fragile little children praying that time, prayers, and the wisdom of the hospital staff would grant them miracles. I so much wanted to do something tangible but there was nothing I could do. Fast forward fifteen years. I’ve been blessed to give birth to four healthy full term babies and was blessed with an overabundance of breastmilk after the last three. I have donated thousands and thousands of ounces of breastmilk to a milk bank and interestingly some ended up at the NICU I was in fifteen years earlier. Any inconvenience I experience pumping all that milk is such a minor sacrifice. I remember leaving the hospital three times with empty arms because of miscarriages. If I can help even one mom leave the hospital with her precious baby happy and healthy in her arms it has all been worth it.

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