Guest Post: Miracles of Motherhood

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I’ve “known” Barbara for years, as the only other Jew on a message board we frequented. I didn’t realize she had been reading this blog until she left a comment on the pizzeria post. I knew she had an interesting story, so I asked her to share. It’s not only miraculous. It shows how a proactive and informed mother can cooperate with medical professionals to override standard procedures and policies and ensure optimal care.

It’s true what they say: all children are miracles– just watch PBS’s NOVA that depicts the amazing process of pregnancy and birth. There are, however, stories that transcend the definition of miracle. I would like to share my two stories with you.

“What would you want to do THAT for?”
At age 29, I made the drastic decision to lift “the girls” up off my waist and put them back where they belong–in other words, breast reduction surgery. At the initial surgical consultation, the surgeon asked about children and breastfeeding, I told him that I didn’t think I’d ever have kids, but if I did, I wished to preserve my ability to breastfeed if I could. My mother, who had accompanied me, was dumbfounded. “What on earth would I want to do THAT for?” she asked. I ignored her, and the surgeon agreed to do the best he could. A little over a pound was removed from each breast. The surgery went well, and I was thrilled with my new lightweight, perky friends.

The first miracle
At 32 I (finally) got married, and three years later my husband and I decided to try and get pregnant. Two years’ worth of trying later, we found ourselves gearing up for a round of IVF when we got a call from the clinic. “Sorry, we’re going to have to cancel this round. You only have two small follicles, and that’s not enough for us to harvest.” Fed up with the nonsense (Clomid, 3 IUI’s, and now IVF) I declared, “That’s it…I quit…we’re just going to have a really good life without kids!” My husband agreed, and we decided not to go back for another round of IVF.

A couple of months later I went to my annual OB/GYN visit. I mentioned that I hadn’t had a period in a while (a problem I’d had intermittently since going off birth control several years earlier). The doctor offered to give me a prescription medication to “force a period” if I wanted. I told him no, but asked if he’d mind doing a couple of tests “just in case.” So you remember what I said about children being miracles, right? It turns out that one of those “small follicles” that weren’t good enough for IVF harvesting got fertilized the old-fashioned way! My daughter, who apparently likes surprises and chaos, arrived a month early via c-section. She weighed only 5 lbs. 14 oz., healthy except for jaundice.

The breastfeeding miracle

The big question was: Would my artificially perky pals work? I had read as much as I could about BFAR (breastfeeding after reduction), but the bottom line was that I wouldn’t know until I tried. So I nursed. And I pumped (although I never got much using a pump). And I took Fenugreek. At her pediatrician’s insistence, we supplemented my daughter with formula, but I hated every moment of it. We kept up this crazy schedule for six weeks. Once she was past her jaundice issues and she had begun to put on weight I insisted on exclusive breastfeeding to see if it would work. The doctor was skeptical and thought it would be a huge failure (after all, the baby was taking the formula supplements, wasn’t she?), but after a nerve-wracking week that convinced me she was both starving and dehydrated, we discovered that she was perfectly fine and had gained weight. Breastfeeding worked! We never looked back and nursed for 18 months until my daughter quit on her own.

At her first birthday, I became convinced that my daughter needed a sibling. After a long anovulatory cycle, I was able to get pregnant again on my own. The baby was due around my daughter’s second birthday, but I assumed it would be a month early, just like the first. If only.

Another miracle: 500 grams
My second daughter was born via emergency c-section at 26 weeks – slightly more than three months early because of PPROM (pre-term premature rupture of the membranes). She weighed 500 grams (1 lb., 2 ozs.) and was only 11 inches long. Her head was the size of a peach, and she looked like a wrinkled old lady. Our family entered acronym hell: NICU, IUGR, PDA, ROP, PIP/PEEP, ETT, CLD, BPD and NG, to name a few. We were told that the NICU experience is like a roller coaster. Our experience was more like a very long climb up a steep mountain. We made progress, but with twisty trails and peril always at hand.

Micro-preemies are born without the ability to nurse. Even if they could, they wouldn’t have the energy. When they’re stable and ready to begin feedings, they’re given a nasal gavage (NG) tube that goes directly from their nose to their stomach and food is pushed through. (Prior to that, they receive TPN or Total Parenteral Nutrition through an IV line). Breastmilk is critical for micro-preemies because of their immature systems, so I expressed milk from the moment my daughter was born. I remember squeezing out colostrum drop by drop into a glass container while my aunt and cousin visited – I really didn’t care if it bothered them, my daughter needed liquid gold! I already knew my breasts were capable of supporting the nutritional needs of an infant, but I stunk at pumping.

I remembered reading about the drug Domperidone on a BFAR support board, so I ordered it from a pharmacy in New Zealand. The drug is not available in the US, and the FDA has actually issued a warning about it, but for me it was a lifesaver. With the help of the Medela Symphony pump, the NICU’s lactation consultants, and Domperidone, I was able to pump enough to meet my daughter’s base nutritional needs in the NICU. Because my daughter was so small, my breastmilk was fortified to increase its calorie content and help her put on weight. Infant formula, corn oil and polycose powder (a sugar) were added to bring the per-ounce calorie count to 32 kcal. My daughter never lost weight during her time in the NICU (truly amazing), and almost always gained weight. But I hated the fact that she had to have all these supplements.

So why is breastmilk so crucial to micro-preemies if they’re just going to add formula to it anyway? Well, according to these articles, (http://crystalblue.tripod.com/papers/nec-1.html#Massoni), (http://www.smh.com.au/articles/2004/05/02/1083436476738.html), breastmilk adapts to the needs of the premature infant. Preemies have delicate, immature intestinal systems and are prone to a deadly condition called necrotizing enterocolitis (NEC). Breastfeeding does not totally eliminate the risk of NEC, but it greatly reduces the incidence. In addition, breastmilk may help prevent sepsis, a deadly infection.

My daughter spent 3.5 months in the NICU. Thanks to a wonderful nurse, her first exposure was to my breast, not a bottle. She licked and was done, but the stage was set. Each time I visited and she was awake I put her to the breast until one day she actually gave a little suck. Slowly but surely she learned how to nurse, despite the fact that she was also learning how to bottle-feed (micro-preemies must be able to bottle 100% of their feeds without negative incidents before being released). After her release we had to continue with the high-calorie supplements, but she still nursed once a day and I continued pumping. Because she was gaining weight beautifully I was able to convince her pediatrician that we needed to start dropping the supplementation. One by one, each of the offending supplements (oil, sugar, and formula) were dropped from her diet until I found myself nursing her exclusively and we never looked back.

My daughter weaned herself when she was 2.5 years old. At 5.5 she’s experienced numerous health challenges (multiple pneumonias, RSV, immune deficiencies, vision and ear difficulties), but all her doctors agree that she’s done amazingly well. One huge hurdle remains: she has been diagnosed with autism, but as each day passes we see more and more progress. She’s smart, sweet, strong, and solid. She and her older sister are truly my miracles.

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Comments

  1. mother in israel says:

    KE, thanks for sharing the information and your story!

  2. Phew! What a story! Just one thing to add. Domperidone IS available in the United States. It can be prescribed by your doctor and a compounding pharmacy can prepare it. It’s not officially approved by the FDA, but it’s not illegal either. I used it with DD#1, but not even that solved our breastfeeding woes. After 12 weeks of trying to create a milk supply that just never came in, we switched to bottle feeding. For DS#1, I tried to breastfeed for 6 weeks, then switched. The next two we adopted, and I knew I’d never be able to nurse them! :) We’re all fat and happy anyway. :)

  3. Wow. What an amazing story. It’s a testament to your dedication as a mother. Awesome.

  4. mother in israel says:

    I wouldn’t enjoy giving my children those things, just like I don’t like it when I have to give antibiotics. They may be necessary, but may also have negative side effects.

  5. “One by one, each of the offending supplements (oil, sugar, and formula) were dropped from her diet until I found myself nursing her exclusively and we never looked back.”
    Why are things that saved her daughter’s life considered offending substances?

  6. mother in israel says:

    I’ll let Barbara answer the question about whether she was grateful or not.
    My point is that I understand Barbara’s relief at being finished with supplements. You can be concerned about side effects even if they are minor and even if a medication is necessary. You still want to use as little as possible.

  7. I wouldn’t consider negative side affects “offensive”. I would be disturbed, I’d try to relieve them (probiotics for diarrhea from antibiotics). But despite them, I would be grateful to modern medical science that my child could survive against such great odds. I don’t get that sense from this post.
    I haven’t seen any side affects from antibiotics that are worse than the symptoms they are prescribed to treat (strep throat, pneumonia). In those cases, I’m relieved to be able to give them to my child and speed her/his recovery.

  8. KE, I did have a compounding pharmacy prepare domperidone for me, but I found it ineffective. The brand-name drug (Motillium) worked wonders for me. I’ve heard anecdotally that the compound just doesn’t work for many. Motillium is not available in the US, but as you say it’s not illegal to import it.

  9. Abbi,
    I do find formula offensive (my personal opinion). I believe that corn oil in an infant’s diet is unnatural, as well as chemically created sugars. I don’t feel that any of this supplementation really represents “modern medical science”. The high calorie supplementation is a double-edged sword: it does pack on the weight for babies who desperately need it, but it also increases the predisposition for later obesity (a sensitive issue in my family). But primarily, because those supplements stood between me and my daughter nursing full-time, I found them offensive, just as I sobbed when my older daughter was given bottles of formula in the hospital while I sat attached to a breastpump.
    Now, am I grateful that the supplements contributed towards my daughter’s survival? Of course!! But I couldn’t be done with them quickly enough, especially since she was out of danger and I knew they were no longer necessary.
    You wrote, “I would be grateful to modern medical science that my child could survive against such great odds. I don’t get that sense from this post.”
    Wow. I sure hope you don’t mean that as maliciously as it sounds, so I’ll try to explain what you’re missing.
    The day my daughter was born she was placed on a ventilator, where she remained for 41 days. The day she was weaned from it and went on CPAP instead? We celebrated! The day she weaned from the CPAP and went to a high-flow nasal cannula? We rejoiced! The day she went from a high-flow cannula to a low-flow cannula? We high-fived. Does this mean we were ungrateful for the ventilator technology that kept her alive? Or the CPAP or the cannulas? Not at all. What it means is, the ability of a preemie to graduate AWAY from all the vital supports is how a parent measures progress and creates the hope that one day soon their child will be well enough to come home. Being a NICU parent is unlike any other kind of birth experience you can imagine. The things we go through and the things we see we wouldn’t wish on any other parent, and we don’t really expect others who haven’t been down that road to understand it. Never doubt my gratitude to the nurses and doctors who saved her life as well as the scientific means available to them to effect this miracle. My daughter wouldn’t be alive without them. Had she been born just a few short years earlier, she wouldn’t have survived at all (most likely). But all those marvels of medicine stood between my daughter and me, so it only makes sense that I would want them gone, gone, gone as soon as humanly possible.

  10. Barbara, I certainly had no malicious intent in my response. And I don’t doubt that you celebrated your daughter’s graduation from various medical interventions.
    I just can’t imagine calling such interventions that saved my daughter’s life “offensive” in the first place, including the ones that allowed her to gain weight. Without that weight gain, I don’t see how she would have been able to survive such a fragile birth.
    I also disagree that mass produced sterile formula that allows the children of mothers who cannot produce enough milk, adopted babies, orphans or any baby who cannot have access to breastmilk for whatever reason, to thrive is not modern medical science. Before the advent of mass produced formula, these children simply died, especially the children of poor people who could not afford to pay a wet nurse. Or they died of unsterile or nutritionally insufficient concoctions.
    As for obesity and supplementation- i think the evidence is a lot more tenuous than the dangers of insufficient infant fat intake and the effects on brain development and general growth. I can’t imagine worrying about possible future adult weight issues when my daughter was struggling to gain every ounce.

  11. mother in israel says:

    Abbi, for the record, powdered formula is far from sterile and has many times been recalled because of bacterial contamination. Do a search for formula+bacteria+recall.
    Just one example: http://articles.latimes.com/2003/jan/10/nation/na-briefs10.4

  12. In case anyone wants or needs to know Motillium is avialable in Israel.
    At any rate, thanks for sharing the story. Your dedication to being able to give your daughter Mother’s Milk is amazing

  13. Abbi,
    My daughter didn’t struggle to gain weight. If you had read my story carefully, you’d see that I specifically said she had no trouble gaining weight, never having a day where she actually lost any. That’s almost unheard of in the NICU.
    I didn’t like that my daughter needed supplementation and I don’t like that it was part of her diet. It’s impossible to know if she would have thrived without them since she did, in fact, receive them. Why you feel that it’s “unimaginable” I would find them offensive is beyond me, but hold whatever opinion you like.
    You are mistaken about the link between obesity and high-calorie supplementation of preemies being tenuous. My daughter’s pediatrician is well aware of this link, even though he is not an expert on prematurity studies. When she was an infant, we were concerned with balancing her need for appropriate weight gain against packing on fat cells that would be present for the rest of her life and possibly predispose her to obesity (along with our genetic contributions). We continue to watch her weight/height ratios as she is a very solid, though not fat, child.
    Let’s just agree to disagree since you clearly don’t understand my POV.

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