Part 1 - Diagnosis
I had been married to my wonderful husband, Cristian, for a little over a year when we received the news that we would become parents. Our son Lucas was born in November 2015, at 37 weeks and weighing 2.365 kg (5 lbs., 3 oz), classifying him as an extremely underweight baby for his age and placing him on the 0% growth curve. Although I had not gained much weight during my pregnancy, my doctor never had any concerns as the baby and I both seemed to be very healthy. In all the ultrasounds, Lucas appeared to be growing well. No one could explain why he was born so small. I was blessed to be able to breastfeed him right away without problem, perfect latch and plenty of milk supply. He immediately began gaining weight and his blood work was normal, so they sent us home from the hospital in hopes that Lucas would catch up quickly as most babies do.
During the first two months of Lucas’ life, he gained weight well and seemed to have no issues except for some cradle cap and baby acne, which the doctors assured us would go away on its own. However, when he was 2 months old—right after his vaccinations I must add—his body became covered in eczema from head to toe, and his weight gain stopped. One doctor we consulted was convinced this was an allergic reaction, which we found strange, as I had been eating the same healthy, plant-based diet for 5 years, so clearly it was no allergy to eggs, dairy, or meat. We did some basic blood allergy testing at 2 ½ months and it came positive for both items we tested, wheat and soy, and his antibodies, Immunoglobulin E (IgE), were off the charts. Later we would find out that he would test positive to every single food, and his IgE levels continued to go up higher and higher each month.
I was breastfeeding during this time, and the moment we received the positive test results for wheat and soy, I stopped eating every food containing those ingredients so as to not pass them on to Lucas. Unfortunately, eliminating these foods did absolutely nothing for Lucas. We kept on waiting in hope that we would see his eczema improve, but this was not the case. And here started our long, very long, journey of figuring out all his allergies and sensitivities. Things would get much worse before we would find healing.
From very early on, when he was about 4 months, I suspected a malabsorption issue as he was not gaining weight well, but was constantly breastfeeding. We always thought Lucas had too many bowel movements, even for a breastfeeding baby, and he also didn’t have too many wet diapers. When we started introducing solids to his diet at 6 months old, things got even worse. He began vomiting and it became clear that he had chronic diarrhea. At this point, he completely stopped gaining weight.
When Lucas was 8 months old, Doctors suggested hospitalizing him to feed him more calories through a NG tube and to run some tests. The result was more vomiting and diarrhea, which we believed was from the formula they were feeding him. They diagnosed him Eosinophilic Esophagitis, or inflammation of the esophagus due to food allergies. This is what was causing the vomiting, but it did not explain the root cause. We were sent home with a prescription of oral steroids.
The struggle continued over the next few months and years. His eczema became unceasingly worse, his diarrhea was out of control, and he would vomit any time he ate solids. On good days, he had 15 bowl movements, and on bad days, he could have up to 30. It was impossible for Lucas to gain weight like this. His weight would fluctuate a few ounces, but for 2 years he weighed only between 14 and 15 lbs.
Can you imagine? A 2-year-old weighing only 14 pounds? We were desperate. We felt so powerless. My poor baby was in constant pain and discomfort. There were days he could do nothing but breastfeed. If he wasn’t breastfeeding, he was crying in pain. We tried everything to give him relief and health but had constant failures. No doctor seemed to be able to help. Our faith was tested to its limits. It would be 2 years of agony and suffering before we would find the right help—and see God reveal His glory in Lucas.
One reply on “Part 1 – Diagnosis”
My heart breaks reading this!