Issue #29 – Exploring FPIES: Family Story

Posted on Posted in All Articles, Down Syndrome and Congenital Heart Defects

Sara Weber


Shlomo was born full term and everything seemed normal to everybody around me, except for me. It was only after several weeks that he was diagnosed with Down syndrome. What I thought would be the biggest challenge of raising a child, turned out to be miniscule in comparison to what else was going on.


Upon coming home from the hospital after birth, Shlomo didn’t eat normally. It was very unusual; he was my seventh child. All my previous children weighed in at approximately ten pounds at birth and they were all hungry babies. When Shlomo ate 2 ounces he vomited. My previous babies were non-vomitters. This was a red flag. In addition to the vomiting there were very wet diapers, but they were not wet from urine. Shlomo was emptying his bowels in a way that his movements were loud, explosive events with just lots of wetness to show for. It was always just wet. Later, when he was failing to thrive the doctors inquired whether he has wet diapers and I happily answered in the affirmative. That gave the doctors confidence that Shlomo was doing well.


Thank Hashem, I was very diligent with Shlomo’s doctors’ visits. It actually started after I was discharged from the Mother and Baby Convalescent Home where I recovered post-birth. The attending nurse there advised me to see Shlomo’s pediatrician ASAP, but couldn’t explain why. She had an unsettling feeling about him.


I was at the doctor’s office every day. Shlomo was 3 weeks old and still hadn’t been diagnosed with Down syndrome nor hearing impairment, even though he had failed three hearing tests at the hospital after birth. But the worst part was that none of the doctors were able to figure out his strange gastro behaviors. His loud and rumbling bowel movements, his very wet diapers and continued weight loss were all proving to be a big mystery.


We switched formulas six times.


At some point during this difficulty, at my prodding that Shlomo looked ‘syndrome-y’ we were sent for blood tests and it was determined that Shlomo does indeed have Down syndrome. But this did not explain why he looked so horrible. He was gaunt, weak, colorless, limp and had a weird cry.


So, our journey continued. The diagnosis of Down syndrome still didn’t justify Shlomo’s failure to thrive and his unusual symptoms. Shlomo’s diapers continued to be so wet after he moved his bowels that the liquid would seep through his diaper, undershirt, outfit, triple-wrapped blanket and my skirt! Everything was soaking wet!


Each doctor’s visit left me feeling more helpless than the previous one. By now Shlomo was 4 weeks old. One day I had a revelation as I was changing his pamper. He was moving his bowels and water was gushing from him like a fountain with violent force. At a later date, after diagnosis, it was explained to me that his body was getting rid of ‘his insides’; it was rejecting all the food that entered. Pooping clear liquid is a sign of an intestinal infection. That evening Shlomo’s head looked strange. By hashgacha, my then-12-year-old daughter had learned in school about a sunken fontanel, the soft spot on a baby’s skull, becoming more deep set than usual. This is one of the major signs of severe dehydration. She said to me, “Mommy, this is exactly what my teacher explained. Look at Shlomo’s head.” I quickly took pictures and sent them to the doctor on call at the pediatric practice we patronized. He prodded me with the same questions – ‘wet diapers?’ ‘Yes.’ ‘Don’t worry.’


That night Shlomo slept in an infant seat beside me on the floor; I needed to be very close to him. The doctor said he was fine but my Mommy’s heart knew better. He was whimpering and making noises with every labored breath he took. By 6 a.m. I had had enough. I called the doctor’s office again and my favorite doctor in that practice was on call. I told him that I suspected that something was terribly wrong. He told me to bring Shlomo into the office once they open. But I said, “Doctor, I am doing that every single day and we are not getting anywhere. Doctor, I am checking into Maimonides Hospital. I’ll meet you there,” and he agreed. I lost precious time because I bathed the baby again. It was my coping method during this ordeal; I bathed him every hour. Perhaps subconsciously I thought I can wash away his issues…


My husband drove us to the emergency room. At reception there was a sign that read: If your child has breathing problems or…please just go through the doors ahead. I looked at my husband and said, “That refers to us.” I just felt it in my gut; Shlomo had no time left. I dashed through those doors, yelling, “Where is the doctor? My baby is not okay – help!” The most incredible nurse grabbed the baby. I was shaking. He unzipped Shlomo’s snow suit.


The rest is a blur…


I heard “Code Blue! Code Red!” Shlomo fell off the cliff! Later it was explained to me that a baby can ‘hold it up’ for a while and suddenly take a turn for the worst. Every team in the ER came running; the ICU neo team, the lung specialist – his lungs collapsed, the heart specialist – his heart gave way, it became a high-level emergency trauma. Our pediatrician arrived. He looked at me in astonishment. The ER team working on Shlomo told me he has 15 minutes left and then it’ll all be over. “No! No! Please, Hashem, don’t take him!” I couldn’t even cry; I was too frozen.


Shlomo was in septic shock. He was attached to multiple IV bags and was placed on life support. His body temperature plummeted down. Fresh formula that hadn’t digested was pumped out of his stomach. Miraculously he was stabilized. No one knew what just happened and why.


We were admitted to a room in the PICU (pediatric intensive care unit) for further tests and life support. A very young doctor asked me peculiar questions. All of Shlomo’s symptoms began to make sense to him. This doctor had just learned of a new rare syndrome – Food Protein-Induced Enterocolitis Syndrome – in short, FPIES. Shlomo was the first patient at Maimonides Medical Center to be diagnosed with FPIES.


The next few days were a fight for survival. This new young gastro doctor explained to me what he knew about FPIES; very little. It’s not an allergy; it’s an intolerance to protein. Protein is very tricky. Would I even know that squash has protein… that the flu shot has traces of eggs…


I knew then that Down syndrome is not a problem. Neither is hearing impairment. FPIES was a battle we needed to fight.


The hospital needed to starve Shlomo so that his gastro-intestinal tract could heal; only little droplets of IV fluid were allowed. Doctors randomly came to check on him, saying they haven’t seen such a severe case of near death in an infant who then made it back! Our pediatrician, the senior doctor in his practice, came to visit. He told me that this was the first time in ‘forever’ that he had to go back to the books! It was the first case of FPIES he had ever encountered.


The Emergency Room graced their walls with a picture of Shlomo, the baby who was saved by a miracle.


We took our baby home after about two weeks, with a feeding tube up his nose and with instructions that made me dizzy. But we are stronger than we think.


Shlomo tolerated Neocate formula. We slowly bottle fed him. Our uphill journey after diagnosis is indescribable.


We were so grateful that Shlomo started to grow. Before we knew it, he was watching everybody eat and started to ask for food. We made it our business to stop eating in front of him. I asked the doctor when can we try to introduce food to Shlomo. He looked at me with terror-stricken eyes and said, “Never!”


I began to research. There was a famous G.I. doctor, who had already retired, but was highly acclaimed. I was able to contact him and he was mesmerized by Shlomo’s story.  He recommended cooking lamb-filled mignon and serving Shlomo the broth. Only Rubashkin was able to get us a kosher piece for $100. I served it to Shlomo twice.


I once had Shlomo staying by my best friend for a coupla’ days. Other than her, no one every babysat him, out of fear; not even my own mother). Shlomo reached for a child’s bottle while at this friend’s home. She remembered it only later, when Hatzolah was already at her home. She called me in a panic. She described Shlomo’s attack to me – he became lethargic, unresponsive, vomiting…


The only respite I had during those very difficult years was reading time and again that the possibility of outgrowing FPIES at around age 5 is very real. Today there is a much larger FPIES community and support. It is already widely known that at around that age many children’s bodies are stronger and they can start tolerating foods. It is trial and error. Shlomo’s first non-Neocate food was slush; it’s ice and flavoring. Flavoring is a chemical – it’s not even food!


Today I can proudly state that my family and friends were an amazing support group and together we got through the worst of the worst. I have many people who are deserving of our ‘Thank You!’, but the one who stands out most is the amazing cook at Eis Laasois, the pre-school Shlomo attended at the time. She would cook separate food for Shlomo on a daily basis. She would call me from the health food store reading ingredients off items and checking with me whether they were okay for Shlomo. Shlomo also has many favorite volunteers who treated him to Shabbatons and cooked food specifically for him, never tiring.


Today, Shlomo is an inspiration to all of us.


Yaakov Shwekey’s meaningful song was released around the time of Shlomo’s illness and it spoke directly to me: “I promise…I knew that I can be that mother…I promised I’ll speak for him when he can’t, I promised I’ll hear for him when he can’t, I promised he will never  be hungry even if he cannot eat, I promised him I will be the best I can be because Hashem gave him to me…and after all the hardships He still let me keep him even though He almost didn’t…