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!