Diagnosis Highlight: FPIES, Food Intolerance — Guest Post

Diagnosis Highlight: FPIES, Food Intolerance — Guest Post

[title size=”2″]Meet Wyatt[/title] Wyatt was born on a beautiful June day, 3 years ago. He has been a fighter from his very first seconds. In the womb, he fought to stay alive and grow. In his first moments of life, he fought to live and to breathe. Wyatt was born without surfactant in his lungs to help them expand and spent some time in the NICU getting help breathing. After a scary week in the hospital, we brought our miracle baby home. From day one, he was a screamer. He screamed all.the.time. You may think that I am exaggerating here, but I can promise you I am not. We rocked him, we swung him, and he spent hours in front of the dryer in a vibrating swing because it was the only thing that helped calm him, even a little bit. I would wear him all day and rock and swing and bounce constantly to help him settle. If I did the dishes, I would put him in the bouncer and bounce with one leg as I did the dishes so that he would just cry, instead of scream, until he passed out. When I tell you that he never slept, I mean never. The doctor told me that he was colicky and to give him gas drops and rub his tummy. He would projectile vomit everything that went into his mouth. I was used to that, because his sister did that too, so I didn’t think anything of it. When he would fall asleep, he was propped on my shoulder in a certain way and he would moan...
Diagnosis Highlight: HPE – Guest Post

Diagnosis Highlight: HPE – Guest Post

Umm… I am sorry, could you spell that for me please? We said this for the first time on November 1st, 2007, about a week and a half after my daughter Dylan was born at just under 31 weeks at a whopping 2 lbs 8 ounces. We were asking the nurse because¬†when we asked the doctor a few days prior he said, “It’s just a big word that’s used to describe a lot of things.” (Yeah, I can’t believe we took that as an answer either, but I am not sure we were ready anyway, a blessing in disguise?) Subsequently, we have been asked to spell ‘it’ approximately a hundred million times. The answer: Holoprosencephaly. Wait! Don’t Google, don’t ever Google…. Not yet anyway. Let me go first. Holoprosencephaly (HPE for short) is a brain malformation where the brain fails to split into four hemispheres. Usually there is no midline separation between hemispheres. It happens within the first weeks of gestation (just as you are finding out you are pregnant) and can be very mild to severe and incompatible¬†with life. There are certain midline facial features associated with it, eyes are closely set, nose not formed properly, cleft lip and pallet. Completely adorable (if I do say so myself…). HPE is often diagnosed in utero; there is an online forum and new mothers come in all the time with so many questions. The main thing you hear the ‘been there done that’ parents say, over and over, is that no two kids with HPE are alike. They all write their own books. The brain is such an incredible organ...