Wednesday, January 4, 2012

Slowly killing my children with breastmilk

While this may sound like an exaggeration, I think this title is a fair medical description.  My obstetrician, who is very pro-breastfeeding, actually said at the first appointment where we found out that I was pregnant something to the effect of “you’re not even going to try this time”. 

My mentality from the time of Trajan's birth was that while there might be some debates over how strong the merits of breastmilk are, there’s pretty much universal agreement that there are benefits and that’s what I was going to do, dadgumit.  I had a great supply and with a nipple shield to help with inverted nipples, we were gangbusters. 

Then, the day he turned two weeks old (two days after we were finally able to get him off of the biliblanket for jaundice), I became convinced that stooling more than once an hour with mucus was not right.  The doctor agreed and sent us to the hospital where we stayed for the next six days.  They found blood in his stool and the conclusion was that he had protein intolerance issues.  I immediately went on a diet elimination and pumped for three days while he got formula and then they put him back on breastmilk.  The blood and mucus improved, but he still had some of the telltale signs of protein intolerance: skin issues, sinus/ear infections, and stools that were just a little off. 

By four months, I was eating brown rice, lentils, sweet potatoes, spinach and water.  He was still dropping on the weight chart having gone from 50-60% to under 10%.  I was underweight.  His pediatrician looked at me and said, “we are done.  Both of you are starving.  We are moving him to an amino acid formula.”  The change was amazing both in his health and my sanity.

Then Chiron came along.  I was concerned about protein intolerance and talked about it to the doctors and neonatal nurse practitioners in the NICU.  They all said that there’s not a high incidence of recurrence and that actually being premature makes it less likely as the immune system isn’t fully developed.  And he had no issues the entire time he was in the NICU.

About two weeks after his discharge, right around his due date, he started having reflux issues.  Was checked for pyloric stenosis just like big brother and came up clean.  We immediately went to the pediatric gastroenterologist we had used with Trajan and the conclusion was no protein intolerance, but severe reflux.

Fastforward to September, when Chiron was almost nine months old.  He had always been low on the chart, but at this point had literally not gained in over a month and a half.  And just didn’t look great.  His gastroenterologist still thought reflux and we had done all the imaging possible and so decided to adjust his meds and see what would happen at an appointment the next week.  It was literally the next day that he finally completely tanked.  He became lethargic to the point of being non-responsive.  He had extreme pallor.  Again, we returned to the same hospital big brother had gone to.

They drew blood and he was extremely anemic with some other liver and vitamin levels off consistent with malnutrition or malabsorption or something like that.  His gastroenterologist decided to try an experiment and put him on Neocate since it had worked well for his big brother.  His one condition was that I had to keep pumping through it as he anticipated returning him to breastmilk after the three days.  Chiron went from throwing up over 30 times a day as recorded in the hospital on breastmilk to barely 14 on Neocate.

Chiron had literally no symptoms of protein intolerance, but he did so well on the Neocate that it was obvious that he should be left on it.  At the same time, his doctors decided that we should remove all other food sources from his diet to start fresh.  He had deteriorated so badly on the breastmilk that it was still necessary to give him a blood transfusion before discharge despite the improvement with Neocate.

While the reflux/vomiting improved, his weight didn’t.  So, he was again scheduled for a scope called an EGD.  The results from that was the surprising diagnosis of congenital lactase deficiency.  Good news was the same Neocate formula worked great for it.

So, breastmilk caused both of my living children to deteriorate in nutritional status, develop system-wide symptoms and become failure to thrive. 

At the same time, I have a very rare condition called lactation-induced hypoparathyroidism.  Basically, something about the process of lactating causes my body to attack the parathyroid and shut it down like an autoimmune disorder.  This in turn impacts my ability to regulate calcium in my bloodstream.  We didn’t figure out what was going on with Trajan, who stopped breastfeeding at 4 months, but we did figure it out this last time.  It’s treatable with monitoring and medication and knowing about it makes it less of an issue.

Add to it by over 105 degree fever with antibiotic mastitis while Chiron was in the NICU and the 6-day readmit that I earned and you can see why several people have questioned whether I’d even consider breastfeeding these two.

[Note: be proud of me, I just didn’t write a statement such as if they make it to that state.  Great progress!  No really!  And I should write about it.  The appointment with the grief counselor that my OB recommended that I do was really a good idea.]

So, what is my plan?  I’m only at 9 weeks, so have time to work it out, but my plan right now is to first consult with the pediatric gastroenterologist that both of the boys have seen and who is wonderful and ask his opinion about what the best thing I can do will be.  My gut is leaning towards breastfeeding them for a period of time, perhaps six weeks (?) in an attempt to get some of the immune benefits but not risk the longer term issues?  I have promised Paul that I will not be as gung ho crazy and insistent about it this time.  Our general pedi and I discussed it briefly yesterday and she said that I should definitely talk to the gastroenterologist at Chiron’s next appointment in case he wants me to consider diet elimination during pregnancy.

This is obviously predicated on the idea of them being reasonably full-term.  If they aren’t, I imagine the risks of not giving them breast milk will be greater in that period and I will provide them breastmilk.

So, yes, I slowly killed my children with breastmilk, but do I regret it?  No.  It was an attempt to provide the best for them and I am glad I did it.  I’d do it again and if I’m being completely honest really hope I am able to try.

One last fact.  Despite the difficulties we had with our boys, I donated excess expressed milk with both pregnancies to the milk bank and I am happy to say that it was thrived on by recipients and I know from my time in the NICU may have literally meant the difference between life and death for some preemies.

And I own a Medela Symphony folks, it would seem a shame to not utilize it!


  1. I keep hearing the song, "Killing Me Softly" in my head now, except instead of "with his song," I am singing, "with breast milk." Thanks a lot.

    Also, you should know that I was gung-ho about breastfeeding both my babies. Gung HO! The first thing that happened was that my milk didn't come in for FIVE days. Then, when it finally came in and I managed to pump a couple ounces here and there, because the boys were in the NICU, they got used to drinking from a bottle-nipple. So they enjoyed breastmilk, but flat out REFUSED it from my actual breasts. Dean would actually fight me when I tried to nurse him. Cary would acquiesce a little more, but he'd suck and then cry and then suck and then cry, and my heart broke every single feeding. Finally, after two months of this torture, I said "screw it" (except that's not the word I used) and just went to all formula all the time. I cried a lot and worried a lot, but it turned out just fine, if you ask me. My boys don't seem much worse for wear, and in fact, have been sick much less than some of my other friends whose kids were exclusively breastfed. I'm not saying that to knock exclusively breastfeeding. In fact, I totally intend to try again with Curve Ball. I'm just saying that you never know what life has in store for us Mommies, and we just have to go with the flow and do what we think is best for the kiddies, and in the end, it almost always ends up being -- ultimately -- what IS best for them. So don't beat yourself up about what or how you're getting nutrients into your babies. As long as they are getting nutrified (just coined that word, thanks) then that's all that matters!! The rest will take care of itself.
    (Wow, this was a long comment!)

    P.S. I am VERY proud of you for not qualifying your statement about the two beans in the oven. Very proud, indeed!

  2. I have 11 siblings. One of my younger sisters did not thrive. Mother breastfed all of us, but Erin just did not grow or put on weight. One day an aunt was out and she mixed up a canned milk bottle. No formula 60 years ago, or if there was, we could not afford it. Erin drank and was satisfied for more than one hour. Mother weaned her from the breast and onto canned milk. Today she is a healthy woman and had a very healthy childhood. I would encourage you with all you know and with the Dr. monitoring closely, you could probably breastfeed with success. Boy that was a run on sentence wasn't it?

  3. Oh my goodness! Well, no one can say you didn't try! I'm sorry it was such a road with so much heartache. I'm glad you found something that works for you and your kids!

  4. If your breast milk would cause hyperthyroidismshmism in me...I'D drink it. :)

    So, I've gotta know. 9 weeks....are you looking like you're 5 months pregnant yet ? Are people looking at you with this full term belly and a tiny little person on your hip and wondering WTH ?
    You could tell them that you adopted and found out you were pregnant at the same time. Just to stop all of the questions. People do that all of the time you know :)
    Or tell them that you had Chiron and then decided to adopt twins. They're due in 7 months. :)

  5. You win the getting me to laugh contest! There is some discussion between myself, friends and husband as to whether I really am obvious or not. As I'm not planning on talking to my boss until Monday, I'm going with no, but the general consensus is it looks like my uterus might be on a rubber band.

    I really think the Chiron is adopted and oops I'm pregnant would be a great funny conversation to take with a stranger.

    I hadn't actually thought about him being so little and looking younger and how this will make it look even crazier.

    One plus of his tinyness is that apparently the perinatologist would probably not allow me to pick him up by 20 or 24 weeks if he was more typically sized, but my OB thinks that it will probably be okay as long as he doesn't start packing on weight.

    P.S. How does one not pick up their toddler? Like, how would those logistics ever work?!?

  6. Argh! I'd never considered how you are going to handle random conversations with strangers curious about (relatively) little Chiron and then your ever increasing bump!

    I really admire you, you really went to such lengths to give your babies the very best start and it so unfair that it ended up in so many problems. I hope that knowing about all of these things in advance will help you to come up with a plan that will enable you to give these two little ones a great start.

    That donated expressed milk is such an amazing gift and I'm certain it would have made a real difference to so many babies and their families.