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Necrotizing Enterocolitis (NEC) and Why Donor Milk is So Important

Looking for The Lactivist? She's retired. But you CAN still find Jen blogging. These days, she's runs A Flexible Life. Join her for life, recipes, projects and the occasional rant.

Saturday, December 03, 2005

When I first became a milk donor, I didn't really know much about why it was so important for some babies to have donor milk instead of formula. As a breastfeeding mother, I knew that breastmilk was the best nutrition, but I was also confident that formula was a perfectly fine alternative. It wasn't until I started doing some research and talking to the ladies that work at the milk bank that I learned just how vital breast milk is for extremely premature babies that must spend time in the NICU.

One of the primary reasons that human donor milk is preferred over formula is because it has been shown to significantly reduce the risk of Necrotizing Enterocolitis (NEC). In fact, babies that receive breast milk instead of formula during their NICU stays are three to four times less likely to develop NEC than their formula fed counterparts.

What is Necrotizing Enterocolitis (NEC)?

The easiest way to understand it is to break the words down. Entero and Colo refer to the small and large intestine and "itis" implies inflammation. Necrotizing is the death of tissue. Thus, NEC is a disease that kills off an infants ability to digest via the large and small intestine. NEC is the most common gastrointestinal issue faced by extremely premature infants.

About 10% of babies that are born weighing less than three and a half pounds (1500 grams) will experience a bout of NEC. This happens because their bowels are usually underdeveloped and they are at a high risk of infection. The mortality rate for infants that contract NEC is about 25%.

NEC affects about 25,000 babies each year. Many within the medical profession believe that NEC is on the rise because modern technology has allowed us move back the birth date at which a baby has a chance of survival. Because we are now able to treat lung and nutritional needs of extremely premature infants, we have more surviving, thus giving the a chance to live long enough to contract the disease. In times past, the babies that are most susceptible to NEC would likely not have survived for very long past birth.

While breast milk has not been shown to cure NEC, it is known to help prevent it, which is why it's essential that we find a way to make sure each and every baby born at such a young age has a way to receive human milk. Many mothers have difficulty getting their milk to come in after such an early delivery which leaves donor milk or formula as the only option for many of these babies.

Spreading the Word

I've been amazed to find out how few people know that donor milk is an option. Just in the past week, I've heard of two women that are friends of friends that delivered their babies at extreme premature dates. (24 weeks and 28 weeks) In one case, the mother was encouraged to begin pumping immediately in order to provide her own milk for her baby during its stay in the NICU. In the other case, the mother was unable to express any milk and my friend didn't know if she was aware that donor milk was an option.

The Human Milk Banking Association of North America has an updated list on their site of all the milk banks in North America and the contact information for the center directors. This site is a wonderful resource to point people to if you happen to know someone that gives birth to a premature infant.

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  1. Anonymous Amber | 7:27 PM |  

    This is SO true. My baby died at 11 days of age in the NICU. She was originally in there for Hypoplastic left heart syndrome which is what we were trying to save her from, but instead she died of NEC and she developed it when they started mixing formula with my breastmilk to "fatten her up" they said. A day later she died. They say it had nothing to do with the formula. I had plenty of breastmilk saved up, there was no reason to give her formula in my opinion. Don't you think it's pretty careless of them to give her formula when they thought 6days before that that she had it but she didn't and then she got it 6 days after having the scare. I'm so sick to my stomach. feel free to email me with any questions or advice. amberv716@yahoo.com

  2. Anonymous willy | 6:06 PM |  

    Hi Jennifer, I think it is great that you donate for premature babies. My wife and I have recently been tossed into the late night hours researching NEC. Our sun Grant was born at 33 week gestationaly and by week 34 was starting to take moms breast milk. Everything was going great until we reached a point that the doctors wrote up an order for the breast milk to be fortified. The reason they do this is because between 32 and 36 weeks enutero the baby recieves calcium and other nutrients that help strengthen bones and general growth. He had been on breast milk for a week and doing great, within 1 day of having HMF (Human Milk fortifier), he was diagnosed with NEC. They stopped feeding for a week, pumped him with antibiotics (scary), and within 2 days the healing began. We are now home at week 38 with a healthy baby boy. It absolutley amazed me the lack of knowledge that we as a society have about the causes of NEC, when in our situation there seemed to be a very obvious cause.

    Keep up the good work on the donations!


  3. Anonymous Anonymous | 2:02 AM |  

    Hi amber.My baby was so longed for,after 13 years of trying to have a child I was bless.My baby arrived @27 weeks,13 weeks early.She weighed @2kg.The docters said her weight was excellent and she was on cpap for 1wk.She began to breath on her own after that.Her weight concerned the docters so they started to add fortifers to my breastmilk .As they increased her feeds to 3hourly she started to get drops in her oxygen level.They then stopped and brought her back to her 2hourly feeds which she tolorated really well.1wk later she was on her 3hourly feeds and having the same problems.I was assured that it was nothing to do with her feeds it was just that she was anemaic and they decided she would need blood tranfusion.30minutes after her trasfusion my baby cried like she never cried before. I called the nurse and she said it is nothing. Then my husband called her and asked why she is crying and it was said that she has had a tough day,pick her up.so we did.after leaving her at 10 pm that night we got a call saying she moved back into icu and her stomoch is swollen.We went back just after 2hours of leaving her to see my beautiful baby struggling to breath. She was back on the cpap for 1hour but showed no signs inprovement.Then she was on the ossolater till she died.Within 24hours she past away leaving us .Not having children we coukd deal with but this is so unfair.

  4. Blogger nimra | 2:13 AM |  

    hi my story is alittle same as your .my baby to died of nec at 32weeks. she was born at 27 weeks and did so well. i to think that it was her feeds that triggered the nec but i am assured by the docters that it has nothing to do with that . her nae was so severe that within 24 hours she past away.

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