July 25, 2012

What You Need to Know

If you read nothing else I've ever written, please read this.

You could save a child's life by knowing one simple fact: green is NOT normal. 

 If an infant has any amount of green or green-tinged vomit, call a doctor immediately.

Do not ignore a nagging, panicked feeling that something isn't right. Do not feel sheepish to contact an on-call physician after hours.

Do not be persuaded, as we were, that anything from "orange to green" is normal, particularly in a newborn. It isn't normal; it's bile.

A doctor told me last week she wishes parents would presume any bile at all in a newborn indicates intestinal malrotation until proven otherwise.

One in 500 infants is born with this congenital birth defect, more than those who have Down syndrome or a cleft lip or palate. Even so, most of us have never heard of it, and even medical professionals can be unfamiliar with its signs and symptoms.

Up to half of those affected present symptoms at birth; others can live a month, a year or most of their lives without the life-threatening volvulus (twist) that makes the defect apparent.

See malrotated and properly positioned intestines here
It is the volvulus, not necessarily the malrotation itself, that is so deadly. It cuts off blood flow to the bowels, killing the tissue while making it impossible for nutrition to pass.
The initial presentation of a newborn with volvulus of the midgut may be bilious vomiting ...  Malrotation with midgut volvulus is a true surgical emergency in the newborn. Delay in operation may result in catastrophic loss of a large portion of the small bowel. In patients with severe midgut volvulus, the entire midgut is necrotic and the child cannot survive. 
Mary Brooks had only one purely green incident in four days of symptoms; it was minimal but unquestionably bilious.

The remainder of her sickness, even as it dwindled due to lack of milk consumption, was the color of watered-down orange juice, sometimes with an acidic, greenish tint. Just one fully green spot, however, sent surgeons into a tizzy days later; I wish we'd known its significance.

That our daughter survived long enough to be diagnosed, the surgeon told us, is miraculous. That she needed no portion of her bowels resected was downright inexplicable to him. Even so, a positive outcome was uncertain due to her age, weight loss, dehydration and the length of time it took her bowels to 'wake up.'

While we don't know if or how she'll be affected long-term, we're thankful she has been spared a colostomy bag, short gut syndrome, a GI port and a variety of other ongoing issues babies with malrotation can grapple with after a volvulus.

We praise God for her healing. Sometimes I wish the events leading up to her diagnosis had gone differently, but what matters is she's here. We want every other baby born with intestinal malrotation to survive, too, to grow up healthy and unscathed.

I pray that our story can motivate one doubting parent to seek medical help, unafraid of seeming overly cautious or "crazy." I hope you never have to recall these facts, that no one in your life is touched by it. All the same, please tuck them into the back of your mind.

The bottom line: Green vomit is not normal. A newborn drawing up his legs, having a tense or guarded belly, vomiting for days on end - all this signals trouble.

For malrotation, as with any illness, your best defense is to become informed, trust your instincts and know your baby - then act on that knowledge as needed. When in doubt, call a doctor. Better yet, just show up.

Please share this with your friends and loved ones, and contact your child's physician if you have any concerns at all.

If you're a parent whose child has experienced malrotation and volvulus, don't hesitate to reach out to me.

For more on MB's experience, read about her arrival, emergency, diagnosis, surgery, hospital stay, recovery and discharge.


Maggie said...

Thanks for sharing this critically important information, Anne. Your writing about your daughter has been so beautiful, and I know that getting the word out about your experience and what you've learned will help many others.

Blue-Eyed Bride said...

Oh, Anne. Your story has touched my heart and I just love reading your words. I am so thankful for the miracle of Mary Brooks' health. (I used the s' because I know you prefer it. ;) )

It will certainly help others to have heard about your experience. Xoxo

melissa said...

Thank you for bringing this to my attention, Anne. I would never have known otherwise what a serious issue green vomit could signal. As a new mom, you do worry about calling the doctor too often or for insignificant things. Being armed wiht information like this will make new moms more confident in seeking help for their little ones. I'm so happy that Mary Brooks is doing well and hopefully putting all this behind her.

Whitney said...

Oh, Anne. Bless you and your sweet family. So thankful for Mary Brooks and her health.

Thank you for such an informative post.

Susan said...

You're post is so important. I'm a pediatric RN and we just had a conversation about intestinal malrotation today. Parents, new and experienced, always question calling the doctor because they are afraid to sound annoying, silly, etc. Always trust your instincts, go with your gut and make the call. I'm so happy your sweet girl has recovered so well.

Melissa @ I Pick Pretty said...

Thank you for this. Count me in the group that had never heard of this before. I will take note and pass it along.

I can only imagine how difficult it must have been to share all of this, by the way, let alone in such a thoughtful and eloquent way.

Whitney said...

I'll have to ask my mom, but I'm pretty sure this is what I had when I was a newborn. I was sick for a week and then when they finally took me in, I ended up having to get emergency surgery. I didn't know this was so common, it's scary!

Jill said...

I found you from Megan...my husband actually had this happen to him in April and then developed some complications and had to have a second surgery. He was in the hospital 40 days and it was the most trying time! I related to your feeling pulled two different directions. My husband needed me, and my children needed me at home.

I am so thankful for your daughter's recovery. Thanks for sharing your story.


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