After our extended hospital stay, breast milk has a new meaning to me and Wally: it’s a seatbelt. Plenty of babies do perfectly fine without breast milk, and many mothers have difficulty breast feeding – but, for some babies, breast milk can help save a little one’s quality of life, and very existence. Just like a seatbelt, it comes in handy when you need it, and you never know when you will.

Before Walter was born, I had attended my hospital’s lactation class, and heard the mantra “breast is best”. I was already thoroughly convinced that, just as I will care about what Walter eats when he is older, I wanted to provide him with the most nutrients and antibodies I could. What I didn’t know was how truly important breast milk would be for his future.

Necrotizing entercolitis (NEC) is the number one killer of premature infants in the United States, carrying a mortality rate well above 50%. It is also the third highest killer of young babies (following respiratory failure and infection).   We had no idea going into open-heart surgery that NEC was even a concern post surgery in a full term baby – I had never even heard of it before.

Two days after Wally’s surgery, when he had not yet opened his eyes, and had only begun breathing on his own hours before, we were given the news that Walter’s intestine showed signs of the early stages of NEC. We were told he could be facing more surgeries removing portions of his intestine, and a possible ileostomy bag. I was devastated – and though I knew that some of the most trying times with open-heart surgeries are the complications following within the first 48 hours – my heart ached.

It was then that the pediatric surgery team came through to speak to us, and began asking me about Wally’s feeds before surgery. They smiled. The doctors went on to explain that Walter’s NEC, though present, appeared to be staying stable, and not getting worse. Breastmilk, they explained, likely protected his intestine. Had he been on formula, his outlook could have been much worse.

Had I been unable to supply the breast milk Walter needed after his bowel rest, our doctor would have put in an order for donated breastmilk from another mother to begin his feeds. Boy was that telling. (This is true of babies born prior to 32 weeks gestation as a preventative measure against NEC, also.)

Pumping for Walter around the clock during the 18 day period when I could not feed him was not easy, my supply dropped, and I was discouraged…but it was important. I was lucky. With time, Walter went back to nursing, and we are both now doing well. Through our experiences with other “heart babies”, I have met many who have pumped exclusively for a year’s time, feeding their baby by bottle or NG (feeding) tube all while working, raising older children, or juggling their child’s other needs, such as Down Syndrome. No one said that choosing what is best for our babies would be easy, or convenient. I have a much greater understanding of that now: not just for Walter, but for all babies.

We never know when the unexpected will brush our lives: premature birth, heart defects, underdeveloped lungs, or even surgery occurring in otherwise healthy infants (such as car accidents). Breast milk could be the difference between life and death, or at least between a lifetime of a ileostomy bag. It is about time we acknowledged it.


For Breastfeeding Moms in the hospital (or at home):

  1. Some doctors are incredibly supportive and others find it an inconvenience (I have had both) – do NOT back down, and do NOT be discouraged. Breastfeeding takes more time and patience than a formula bottle. Many doctors do not care for the hassle of breastfeeding until it becomes critical. If you are having trouble ask to meet with a lactation consultant or occupational therapist. Ask about nipple shields and feeding systems. Your hospital will have them, and they can help!
  1. Ask for feeding syringesthese will allow you to store breast milk in anywhere from 1 ml to 1 oz quantities. These are incredibly important if you have a new baby (who is not eating much yet) or a baby who will be slowly refed minimal amounts. Once a bottle of milk is opened, nurses only have anywhere from 4 to 24 hours to use it if refrigerated (depending on specific protocal and warming methods used). I sadly had over 100 ounces of milk dumped due to this, and it all could have been avoided if my milk was stored in syringes rather than 3 ounce bottles.
  1. Find a relaxing place to pump when you have a crying baby to tend to pumping can be incredibly stressful. Send your baby to the nursery, ask someone available to soothe your little one, or go to the lactation room. Watch a movie, listen to music, and drink some tea. It helps the time pass.

    Our little guy, losing weight while on bowel rest recovering from NEC.  Breast milk likely saved him from needing surgery.
    Our little guy, losing weight while on bowel rest recovering from NEC. Breast milk likely saved him from needing surgery.


  1. You made it through with flying colors! Walter is our little Warrior…..and are you his fantastic Mommy. How blessed we are to have you both in our lives. Breast Milk Is Best has a new meaning to all of us touched by your experience. It is wonderful that you are sharing all this information for others who may find themselves in your situation.


    • Frances, This is great advice for mothers. In the past while talking with new mothers of children born with Down syndrome, I was aware of how frustrated they could become when their babies did not have the strength to nurse until they were often three months old. Too bad this advice is not shared globally for all families.

      An outstanding post!


  2. Glad Wally is doing better. All of you have been through a most difficult time, but you are very brave! Enjoy your blogs……….God bless all of you.
    Love and god bless! Aunt Pat


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