When I went into labor with my first child three weeks early, our plans for a home birth went out the window. We rushed to the hospital, where I gave birth to a boy who weighed 7 lbs, 9 oz and was having some respiratory difficulty. The NICU doctor whisked him away, and I found him an hour later, encased in an incubator he seemed too big for, adjacent to another newborn who must have weighed less than three pounds. This was the last time my son would seem large for his age as a baby.
Breast is Best?
The next day, I tried nursing him, but it was very difficult. The truth is, we never quite got the hang of it, perhaps because he was premature . Still, I was determined. “Breast is best.” I would not give my baby formula.
Pumping resulted in one ounce of milk per side, if I was lucky. Sometimes, it took an hour for him to latch on. Sleep deprived and probably suffering from undiagnosed postpartum depression, I became irrationally angry and entertained thoughts of throwing him out the window.
Concern from Others
Yet still, I persisted. Worried glances and concerned comments began trickling in: “He looks thin.” “Maybe you could supplement.” “You’re not feeding him enough.” “He looks terrible.” (That one from my mother, in desperation.) As a first-time mom (and only child myself, with no real experience with babies), I didn’t know what a newborn should look like. I adamantly defended my position, myself, and my son.
Then came his two-month appointment. He weighed in at the same weight as his birth date: 7 lbs, 9 oz. He was wasting away. Heartbroken, convicted, and feeling like an utter failure, I finally agreed to supplement.
My husband and I immediately set out to undo the damage I had done and to increase our son’s weight as quickly as possible. We put infant rice in his formula-filled bottles, and my milk supply dwindled away. By his fifth month, we were done breastfeeding, and my son was a healthy, happy baby.
Our Journey with Crohn’s
Fast forward four more children and 10 years, and here I sit with another son (my second), who is writhing and crying out in pain (sometimes screaming) . . . from Crohn’s. At 11 years old and 5’4, he weighed in at 87 lbs. this week, down 10 lbs. from last fall. Diagnosed in December 2015, he started on Prednisone and methotrexate, which put him in remission by spring. (He weaned off Prednisone with no problem). However, by summer’s end, his symptoms started to reappear. Our GI prescribed Budesonide this winter, which made little impact in the six weeks he was on it.
After some research about how to achieve healing through nutrition, I started him on the Specific Carbohydrate Diet (SCD) in early February. This restrictive diet, which eliminates all grains, liquid dairy, processed foods, and sugars (except honey), begins with a very streamlined introductory phase: eggs, bone broth, SCD yogurt, applesauce, cooked vegetables, hard cheeses, and 100%, SCD approved grape and apple juice.
My son has basically lived on this early phase of the diet, except for the few times we tried to venture into other “legal” foods. Most of the new foods would send him into a flare (pain from inflammation), perhaps because we introduced them too soon. We also made a few mistakes and poor choices along the way, as it is a learning curve to eat this way. He suffered the consequences of those mistakes dearly.
Six Weeks of SCD
For six weeks, I have been committed to this diet, campaigning that it will heal my son’s inflammation. Yet, everyday his condition worsens (except for when he is strictly within the intro phase; then he seems well). He has lost so much weight, missed weeks of school this quarter, and now he is suffering from excruciating pain.
At our last GI visit a week ago, his doctor was very concerned. He insisted we make a choice between starting EEN (enteral nutrition/tube feedings of an Ensure-like product) or a biologic like Remicade or Humira (which blocks the signal to attack and inflame the intestines).
Two Starving Children
As I look at my son, I am reminded of that moment 12 years ago when I realized I was starving my baby, and I am wracked with guilt again at what I have done now to two of my children. I’ve believed more in the cause of natural health than I have in the well-being of my children. I’ve let them suffer the consequences of my dogmatic agenda, malnourishing them in the process.
We made the decision to begin Remicade, and our son received his first infusion two days ago. However, he is barely eating anything now, and we have to fight to get him to drink enough fluids and Ensure (choosing a liquid diet until the inflammation dies down a bit, not that he would even consider solid foods at this point).
I worry about dehydration and further weight loss. He is still in horrible pain and can barely walk. He spends his days and nights on the couch, sometimes in moderate pain, often in severe pain, crying out for help we cannot give.
Hard-won Lesson Learned
I watch my too-thin son suffer in pain from my choices, made in good faith, but harmful nonetheless. The lesson I have learned has been hard-won: Our children are more important than the causes we campaign for. Their health and well-being is our responsibility, and we cannot insist on idealism when reality is staring us in the face. We must give our children what they need, not just what we wish would work.
I still believe that SCD could be a viable option for achieving and/or maintaining remission, but for now, my son needs more than a diet to regain his health and vitality. I live with heart-wrenching regret for the choices I have made as both a new and seasoned parent.
Don’t make the same, misguided mistakes I have. Love your children not just with your words and beliefs but also with your actions. Don’t starve them for food, affection, or acceptance.