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When My Child Couldn’t Handle Formula, a Nurse Offered Her Own Breast Milk

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My daughter Casey was born in 2006 with many medical issues, including no ability to gag, suck or swallow. Not being able to use her mouth to eat, she had a G-tube placed shortly after she was born. Although I was never able to breastfeed in the traditional sense, I knew how beneficial breast milk can be, so I pumped my little heart out. Sadly, it just never worked for me.

We were also told she would be on formula for a long period (most likely her entire life), and we may as well go ahead and get used to it. Very early on (when she was less than 1 month old), we made the switch to formula nutrition. I was sad I could not produce enough breast milk for her, but I came to terms with it, and we made what we had work.

Casey turns 10 in April and has been on one form of formula or another for her entire life. We deal with ongoing gastrointestinal issues every day. Casey has a sensitive tummy and cannot process a lot of formulas. We have been on the same toddler formula for years. In 2012, the formula changed packaging. We were told by our durable medical equipment provider, dietitian and gastroenterologist that the only change was the package — the formula had not changed.

Long story short, it changed. We spend many weeks trying to get answers, and finally the production company confirmed that yes, the vitamin D and calcium had not only increased, but the method of adding them had changed. They did not think it was a major change and therefore decided it wasn’t worth telling their users. If my child didn’t have a sensitive gastrointestinal tract, maybe it would not have mattered, but for her it mattered a lot. We collected as much of a surplus of the old version as possible and tried a few other formulas as well. When we ran out of our surplus, we still did not have the answer.

One of the formulas we tried was an elemental formula. We quickly learned that Casey has a horrible allergy to one of the enzymes in elemental formula. She was given about 100 cubic centiliters (just over 3 ounces — less than half a can of soda) over the course of about four hours. This started a chain of events that took a huge toll on Casey. Her digestive system was so damaged that she could not handle any of the formulas we tried.

One of Casey’s nurses had recently had a baby. She and I were talking about all the issues and how I just didn’t know what formula to try next. She said kind of jokingly, “How about breast milk?” At first we both just laughed. After a couple of minutes, though, we realized it wasn’t a half-bad idea. She can’t digest the heavier formulas, and the enzyme in the easier formulas caused a horrible reaction. Why not breast milk? Casey’s nurse able to pump more than her baby needed, and she offered some of her extra to Casey.

I contacted Casey’s pediatrician to get her thoughts. She thought it sounded like a good idea. So there we were: Casey was 6 years old and back on breast milk. The best part: she did great with it. Sometimes you have to think outside the box. I never would’ve thought to try this. I am so glad her nurse suggested it.  We used the breast milk as a bridge at first, and then we mixed it with other formulas (half and half) to slowly get Casey back on formula.

I thought Casey’s breastfeeding story ended a long time ago. Who would have guessed we’d have another chapter six years later? We’re lucky to have such amazing, loving nurses as well. Her nurses really will do just about anything for her.

two women and child on couch
Marty (left), Casey and a friend

Follow this journey on Casey Barnes.

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Originally published: January 15, 2016
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