Hello, my name is Neallie and I am 4 months old. My name is pronounced Nee-Lee.  Since I am so little, my Mama has agreed to help me write this so that you can know all about me. I was born on October 5, 1999. I weighed 6 pounds and 11.8 ounces and I was 20 inches long. I was a very long labor, almost 28 hours, and then I had to have some help to get me here. So the doctor got out her forceps and the mini-vac and after 10 minutes of pushing, out I came! I didn't breathe very well on my own so I was given some oxygen to help me "pink up" as the doctor put it. After that rocky beginning, I have gone on to become a very healthy baby who also happens to have Beckwith-Wiedemann Syndrome.
     When my pediatrician came to see my parents, he commented on the fact that I seemed to have a large tongue. He told my parents not to worry because it could be that I would just have a big tongue, but he also told them that it might be a symptom of something bigger. He wasn't real sure at this point if something may be wrong. Of course when he said that, my Mama then began to look for signs of what might possibly be wrong with me. You see my Mama had worked with the mentally retarded for five years so she has seen every combination of disorders you can imagine, so naturally she saw every disorder in me!! Daddy finally told her to stop worrying and just enjoy me and that if something is wrong we'd deal with it one day at a time. This is very good advice, because Mama does tend to worry a lot.
     When I went to the doctor for my 2 week checkup, Dr. Sackey once again commented on how large my tongue seemed and how it protruded from my mouth.  I had lost only 2.5 ounces since birth, although I was showing signs of jaundice, as my tongue didn't hinder my eating or breathing, he saw no reason to be concerned. He did tell my Mama to put me in the window to help with my jaundice and that since I was breastfed my jaundice could be quiet high and I would still be okay.
     I had to go back to the doctor 2 weeks later because my belly-button had become infected. It was at this point that Dr. Sackey told my parents that he wanted me to see a surgeon in Dallas.  It seems my belly-button didn't have the usual "grape cluster" look of a normal falling off belly-button.  Mine was very smooth and very red and it had a small hole at the top that oozed fluid. When we went to see the surgeon, he scheduled me to have an ultrasound to see if my belly-button may be attached to some of my internal organs. Although my belly-button never hurt in any way, it would be good to get it off!
     When I went to have the ultrasound, everything seemed fine. We knew that I wouldn't like it but it wouldn't hurt me any. So I'm lying there with the technician pushing that little machine around on my stomach when she asks the nurse to come in and help her. She seemed to be having trouble finding some of my organs. The nurse came in and she pushed on my stomach too and she said the same thing. My Mama was alarmed at this point so she asked what was wrong and they answered that they couldn't find my right kidney or gall bladder! So they left again and came back with the doctor who specialized in ultrasounds. When the doctor came in she explained to my Mama and my Grandma that she would be looking for my kidney and gallbladder as they can sometimes be behind bigger organs in babies as small as I was. She too, begins to push and prod and move the little machine over all over my stomach asking my Mama and Grandma to move me this way and that. By this time I'm not having any fun so I begin to cry. So while Mama is feeding me, the doctor comes in and tells them it does look as if I a missing a right kidney and my gall bladder. This makes my Grandma very upset so that she begins to cry. Mama just stands there, looking dumbfounded, and asks the doctor what exactly do we do now? She said that we would schedule a cat-scan just to see what is going on. She did have some good news, that as long as I was eating and pooping that I would be fine.
     One week later I'm back in the hospital this time to have a cat-scan. The scan confirms the doctor's diagnosis, I do not have a gall-bladder or right kidney. So now I am all set to have my belly-button surgery. My parents are told I'll have to stay overnight, but they can stay with me. Little did we know what was to only be one night turned into 10 days! Once Dr. Kadesky, the surgeon, began my surgery, he found more than what he expected. As it turned out my belly-button was attached to my intestines and my intestines weren't attached to anything!  They were just free-floating in my abdomen- it was what is called a gut malrotation. They said it was a good thing they found it otherwise my intestines may have become tangled and some of it may have died. As it was everything turned out fine. They took out my appendix to attach my intestines and then gave me a new belly-button.
     I had to spend 8 days in the ICU because I was on morphine and they wanted to be sure that I wasn't going to have a reaction to it. While I was there, I saw a plethora of doctors. I saw a cardiologist because my hands and feet stayed cold and were also a little blue. They did an EKG and an ECG once again these tests came up negative, I have no congenital heart problems that I need to worry about. I also saw the geneticist who diagnosed my BWS. She was able to make this diagnosis due to the fact that I had:  macroglossia, characteristic facial appearance, and omphalomesenteteric duct remenant. I did not have the ear pits or creases, but I did have the 'stork bites' and the high, broad forehead- in this case so does my Mama- and I was at the 90 percentile in weight and the 50th for height. So given all these signals she diagnosed me with Beckwith-Wiedemann Syndrome. 
     I came home from the hospital after 10 days and showed no ill signs of my ordeal. You would never have guessed I had just been through major surgery. My geneticist has recommended that I have an ultrasound every 3 months in addition to AFP and renal function tests. Along with these tests, she also wants a VCUG and a UA  (urine analysis) to screen for the possibility of a hematuria, and of course to keep a look out for hemihypertrophy.
     At the present time, I am just like any other 4 month old baby. I like to laugh, smile, and talk to everyone I meet. I love to put things in my mouth to explore all the different textures. I can almost roll from my back onto my stomach, and next month I get to try solids!! Life is great and if you don't believe me just ask my family they'll tell you, I'm the sunshine of their lives!
     I hope this lets you know a little more about me.  My Mama has enclosed a picture so you can see for yourself just how cute I am!!
Take Care,
Neallie
January 2000
email my Mama

She wants to pay very close attention to my one remaining kidney to see that nothing hampers with its function.

read my update after my tongue reduction surgery!