Tuesday, August 10, 2010

A Cautionary Tale about Breastfeeding…

Has breastfeeding become the latest status symbol in our culture?

If you’ve read Hanna Rosin’s 2009 article “A Case Against Breastfeeding,” you might think so. After all, she likens breastfeeding – and the length of time a mother nurses – to the same status one might earn by rockin’ a pair of skinny jeans, owning Tom Ford oversized sunglasses, or possessing the sleekest stroller on the playground. Because being a mom is one thing…but being a cool mom is totally different, right? And breastfeeding seems to have become the ultimate badge of motherhood.

A friend alerted me to Ms. Rosin’s article when I was about eight months pregnant with our first child. I was horrified, to say the least. What a terrible example for new mothers, I thought when I read the article. She should be supportive and encouraging, not pointed and judgmental. She sounded bitter, jaded, and a touch hormonal. I threw it aside without another thought.

But this was all before I gave birth to our bouncing baby boy only weeks later. And then I realized, she was right.

About just about everything.

Our little guy Scotty came into this world two and half weeks early, weighing 8lbs, 6ozs. I endured three months of bedrest due to premature labor prior to his arrival, but I spent my time on the couch well – I read book after book I could find about babies, childcare, and pregnancy. I attended two classes with certified lactation consultants (wheeled there by my loving and patient husband) at my local hospital. It was there I was told to my face that formula was “poison” and there was nothing more beautiful or more natural than a woman nursing her child. Good mothers nurse; bad mothers use formula.

In fact, in one of the classes, we watched a video that showed an interview with a pediatrician who stated (and I quote, since I wrote it down), “Women ask me what the dangers are to breastfeeding. I tell them, ‘there are none. There are only dangers to using formula.’”

Famous last words.

We were released from the hospital after 36 hours. But by the time Scotty was four days old, I knew something was wrong. While it felt like he was latching appropriately, he cried…all the time. I began thinking the “sleepy newborn” was nothing more than a myth. At our first ped’s visit on day 4, he had dropped down to 7lbs, 6ozs. Totally normal, I was told by multiple people, including medical professionals. Still, I pressed for a lactation consultantation that afternoon since there were orange and red crystals in his diaper. This is usually a sign of dehydration, per my books. The ped reassured me it “wasn’t blood,” and encouraged me to continue breastfeeding. She even used several personal examples about her own children, all of whom were terrible nursers at first. She wrote on my chart “dehydrated,” “jaundiced,” made a note of Scotty’s weight, and set us up for a five to seven day follow-up.

The LC recommended I open a “breast-araunt” for the weekend (it was a Friday) and come back on Monday. Nurse constantly, she told me. When he cries, nurse him. Keep him at the boob for hours. Let him use you as a pacifier. I agreed, although this sounded like a prison sentence. There was no mention of formula.

For the next two days, I did nothing but nurse. I used my nipple shield. I warmed wet towel to drape over my engorged breasts with the hope of getting the milk out more easily. I didn’t sleep. I didn’t eat. I didn’t shower. I didn’t do anything other than sit in our new glider with the baby in my lap, with his face up to the boob. And he did nothing but cry when he wasn’t using me as a pacifier. And I did nothing but cry as I felt trapped in the nursery. But I could do this, right? I mean, everyone I know has had a bad nursing experience at first. And they tried, and tried, and eventually, it worked. I considered myself a hard worker, never one to shy away from a challenge, and did it. I bit my lip, swallowed my pride, and chained myself to the glider.

By Monday, we all held our breath when Scotty was put on the scale. It read 7lbs, 8ozs. The LC, a different one from Friday, shook her head with worry. This wasn’t good, and it wasn’t right. She gave us a new plan of action: pump breast milk and then feed it to Scotty via a hand dropper. During the entire consultation, there was no mention of formula.

We stopped at Babies’r’Us on our way home and bought a dropper.

And by Wednesday, things were looking better. Scotty was sleeping more. He was quieter and much more relaxed. I had several doctor appointments that day and each professional commented on what a good baby he was. In fact, it wasn’t until the LC from Monday called Wednesday afternoon to check in did I realize something was terribly wrong.

“What does his poop look like?” she asked over the phone.

“It’s still brown…not the meconium from birth, but it’s really dark and seedy looking,” I told her, exhausted from the day’s appointments, sitting in that damn glider again. My prison cell.

“It’s what?” She sounded startled. I told her again, and it was her tone of voice that sent chills through me. “He’s eight days old…it needs to look like Dijon mustard by now. If it hasn’t transitioned…you need to get him into the pediatrician’s office as quickly as possible.”

Fear hit me like a ton of bricks. I felt blindsided that I missed this. After all, I was just relieved to have a quiet baby. Within minutes, we were on the road back to the doctor’s office. The doctor, too, was stumped and sent us off for blood work. She reassured us that she put a STAT order on the blood so we would receive a call later that night with instructions regarding what to do.

When the call came in at 8pm that night, it brought me to my knees. The doctor on the other line told me that Scotty’s bilirubin levels were at 28. That we needed to take him to an emergency room right now. When I suggested a local hospital, he told me no, go to *** one. It was on the complete opposite side of town, but I agreed immediately. Confused but acting quickly, I raced upstairs to pack an overnight bag when the phone rang again.

It was the doctor. “What is the baby’s mental status?” he asked me.

As a former marriage and family therapist, this question was ridiculously common to me. In fact, it felt laughable that he was asking me in such a manner. I was used to talking about clients’ mental status once upon a time, back when I still had a private practice. Before the bed rest, before the birth, and before this hellish day that just wouldn’t end.

“His mental status?”I repeated. “He’s quiet, lethargic. Extremely sleepy. I can’t wake him to feed him. He won’t wake up.” I was just about to tell him that I think Scotty is exhausted, too, from the day’s activities, when he interrupted me with the most chilling statement I had ever heard:

“You need to call 911 right now. RIGHT NOW.”

I think, at that point, my brain just left. Because I don’t remember feeling anything after that. It was like my heart turned off and my head turned on. I became a robot. I hung up with the doctor. I dialed 911. I told the woman on the other end that I have an eight-day old newborn with a bili level of 28 (whatever that meant) that would not wake up. I had no idea what was wrong, but I knew it was bad.

An ambulance arrived an agonizing seven minutes later, and we arrived at the hospital (lights and siren) in less than 15 minutes.

It seemed like twenty people filled the room immediately, working on my child who was no bigger than a football as he lay on the giant hospital gurney. My husband and I just huddled in the corner, silent, watching the frenzy of action. We recited the events of the last eight days to two doctors who grilled us about our baby’s very short life. We watched as they put the largest blue light on the baby and covered his little eyes with what looked like baby sunglasses. Wires, tubes, and stickers covered his body, no longer than 20 inches. His little doggie onsie, the one my husband had bought just days earlier, sat crumpled and flecked with blood on the bed while Scotty laid naked in just his diaper.

The whole event seemed like an out-of-body-experience.

Eventually, Scotty was wheeled up to the NICU and the nurses told us to go home. It was now 2 in the morning; he was in good care and was stable. They would have more information for us tomorrow. Overwhelmed, both physically and emotionally, my husband and I began the long trek home, unable to speak since both had no idea what was happening.

Over the next few days, we learned a lot. We learned that a normal bili level for an eight day old baby is about 14. In fact, 14 is considered high. Twenty-eight – or 28.9, to be technical – was off the charts. And bilirubin, that substance that is present in the bloodstream of newborns, produced by the liver and excreted by urine and feces, is what causes jaundice, or the yellowing of the skin. I knew Scotty was jaundice – I read the books, attended the classes – but I didn’t understand what the big deal was. 60% of newborns develop jaundice. And none of the brochures, pamphlets, or books mentioned that it was a dangerous condition. All recommended sunlight as a treatment option.

But I understand now. If bilirubin isn’t excreted through urine or feces, it builds up in the blood. Once it hits a certain level (and it depends on the age and size of the newborn), it can cross the blood barrier in the brain. It is toxic to brain tissue.

Toxic. As in, it kills brain tissue…and the tissue doesn’t grow back.

It can cause, among other things, mental retardation. Cerebral palsy. Profound hearing loss. Blindness. And in some cases, death.

Death. As a result of jaundice.

During those few days, we were able to connect the dots. My milk didn’t come in until day 5; since I was told that formula was poison, I didn’t have any formula in the house. I had short-suited myself, intentionally giving away free cans to friends. My child was going to be exclusively breast-fed, remember? Because that’s what I was told. By lactation consultants, friends, the La Leche League, popular media, everyone. Only bad mothers give their children chemicals. Good mothers nurse.

Scotty essentially didn’t eat for the first five days. The colostrum my body produced was enough to sustain him, but not nourish him. When my milk finally did come in, he was already behind the eight ball and was too sleepy and tired to nurse properly. And it became a dangerous loop – too tired to eat, no food to push out the bili. So the bilirubin continues to climb, making him sleepier, making it harder and harder to eat. In fact, breast milk contains trace amounts of bilirubin from the mother, making it harder for the newborn to excrete their own. I later learned that formula is actually recommended when jaundice becomes an issue.

It was the perfect storm of variables. And despite all of my research prior to his birth, not one person or source mentioned this. Not one. And after reviewing six books about breastfeeding, only two even mention the word “kernicterus.” Kernicterus, latin for ‘yellow kernel,’ is the name of the disease given to kids who had hyperbilirubin at birth. Kernicterus kids, more often than not, have the list of conditions listed above: cerebral palsy, hearing loss, mental retardation, etc.

To find this information was astounding. Totally healthy, full-term babies, within days of their birth, develop permanent, chronic conditions that will forever affect their quality of life. All because of high bilirubin. Being “just a little yellow.” And in one study I found, researchers followed kernicterus kids and discovered a shocking 81% were “exclusively breastfed” prior to the spike in their bilirubin. Eighty-one percent.

Why are more people not talking about this? Why are LCs not required to disclose this information to their patients who want to exclusively breast feed? Why doesn’t breastfeeding come with a warning label? After all, we tote our children around in state-of-the-art car seats. We know not to let a newborn sleep on his tummy. Scotty had been given three hearing tests in the first eight days of his life – a non-life-threatening condition – but yet no one explained to us what happens when jaundice goes untreated.

And in the back of my head, during those eight hellish days of breastfeeding, I kept going because I heard a voice chanting, “Breast is best. Breast is best. Breast is best.”

************

Kernicterus can only be diagnosed when the child starts missing developmental milestones, such as head control, eye gaze, and hand coordination. I hadn’t anticipated seeing pediatric neurologists, pediatric gastroenterologist, and multiple visits with my pediatrician, but this was my new reality. I knew that in the event the bili had crossed the brain barrier and a kernicterus diagnosis was imminent, our next step (our only step, really) was early intervention.

I’m happy to report that Scotty managed, by the grace of God, to come out of this ordeal 100% unscathed. He’s a happy, thriving little boy about to turn one in mid-August. He coos, he laughs, he says “dog!” “Dada!” and “Mom!” with reckless abandon. But not all kids are as lucky; there is a Yahoo group dedicated to hyperbilirubin called “newborn jaundice” and the stories on this site are heart breaking. Absolutely devastating. I never deleted my membership, even after we realized Scotty was okay, to remind myself that this condition happens, and it happens all too frequently to be okay.

When Scotty was released from the NICU on day 12 of his young life, I made a vow to myself that if he was alright, I was going to do everything in my power to tell people about our experience. To warn them that sometimes, “breast ISN’T best.” Do what’s in the best interest of your child. Don’t be swayed by the La Leche’s media campaign or overzealous lactation consultants or well-meaning friends. Don’t buy into the playground hierarchy that whoever breast feeds longer is the better mother. I said I would march on Washington if that’s what it came to in order to tell new moms to supplement, use formula and stop the shame spiral that formula feeding has evolved into. It’s not a competition; it’s a life.

And do whatever is in the best interest of your child.

Kim, mom to Scotty (11 months)

7 comments:

  1. I'm really sorry you had such a rough time breastfeeding and I'm so glad that your son is perfectly healthy. This is the first not pro-breastfeeding story and I found it very informative.

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  2. When your son got better did you continue to breastfeed?

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  3. I pumped for seven months. I was too scared to get him on the breast right after everything happened, so I waited about 8 weeks. By then, it was too late. So I just pumped...and pumped. And pumped.

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  4. Wow! That is really impressive Kim with all you went through! I don't know if I could have pumped for that long - I hate pumping!!

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  5. My sister went through some of the same stuff. They just kept telling her to try harder. Finally a Dr informed her she was starving her kid and needed to use formula. Now 13, she is OK but it almost wasn't OK.
    We all need to realize, that as women, if we have a feeling about something we need to stick to it.
    Tiffany

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  6. What a terrible and yet powerful story. Thank you for sharing. Something similar happened to my uncle's wife with their first child.

    In our culture, we are way too judgmental about breastfeeding. If you do, you're judged. If you don't, you're judged. If you breastfeed and formula-feed, you're superjudged.

    I try not to roll my eyes when mothers brag about exclusively breastfeeding their babies. My son is almost 1 year old and has been breastfed every day of his life, but he's had more than a few bottles of formula too. And there's not a thing wrong with that.

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  7. Wow - what an amazing story and I'm so happy to hear there was a happy ending. You're right, of course, that sometimes breast isn't best. It's so hard to manage all the information we get as new mothers. It sounds like you had a lot of the "right" support though - LCs, pediatricians, etc all looking out for your son but unfortunately maybe not connecting the dots quickly enough. Like I said up front I'm so glad it worked out in the end. I really only take issue with one statement that you make - and only as a point of comparison - my milk also did not come in until day 5 and yet we developed no jaundice. I think it's worth it to note that jaundice is not solely a function of when your milk comes in, there has to be some other variables out there as well.

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