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| Dear Julie, What a great resource for parents! I'm so glad to have found this site and would like to say thank you for your thoughtfulness. I'm sure you have brightened the lives of many families dealing with BWS and made their lives a little less frightening. I would like to add my son's story to your list: My son, Wylen, was born naturally on November 16, 2000. He weighed in at 8lbs and 14ozs, measuring 21 & 3/4 in. and was born 5 weeks early. He woke me at around 4 in the morning to let me know he was on his way. This was a new experience for me, as I was induced for both of my previous deliveries. He arrived very quickly, to every one's surprise, shortly before 9 in the morning. We had found his omphalocele at a routine sonogram during my 5th month of pregnancy, so there was a team of peds., surgeons, and specialists ready to go. We had already toured the NICU and been told by the wonderful staff at Arnold Palmer Hospital in Orlando, FL what to expect after delivery. I had undergone an amnio. to rule out Down's Syndrome, but we knew nothing else about what was going to be wrong with Wylen. The geneticist on staff had met with us and given us brief descriptions of several different conditions that were associated with omphaloceles, including BWS. We did a little research on BWS, but didn't focus on any one particular possibility since we really had no idea of what was to come. Wylen was a mess when he came into the world. His cord was discolored and wrapped around his neck, he was not breathing on his own, his beginning apgar score was a 1, and his omphalocele was about the size of a softball. I had received a shot for pain relief and was mildly sedated during his initial examination, but I can vividly remember being very scared and hearing the words 'Beckwith Wiedemann.' They knew right away what he had. Besides the omphalocele and the high birth weight, he also displayed other symptoms: macroglossia, creased earlobes, and his blood sugar went crazy for several days, but was finally controlled with medication. His lungs were underdeveloped slightly, and he received infasurf to stimulate them. He was on the breathing machine for 7 days before he finally pulled the tube out himself and started breathing regularly on his own. I remember going home from the hospital without him, thinking of him laying in that little bed with all of those tubes and I cried all day long. He was stuck with the i.v. needle in so many different places, that I didn't think he was going to be left with a single untouched vein when they were through. I had never felt so helpless in my life. He wasn't eating well, he suffered very bad reflux in the beginning and was taken off and on the feeding tube 3 times before he finally got the hang of it and his body accepted the formula. It was a roller coaster ride for all of us. I can only imagine what he was thinking about--and how strong he was to overcome his early hurdles. I finally got to hold him when he was a week old, and he started improving almost instantly. Within one week, he was breathing wonderfully, drinking from a bottle, his blood sugar was fine, and he was completely responsive to all of us. He was moved to the recovery nursery and within 36 hours his wonderful Dr, Dr. Lipman, had signed for his release. It seemed that a whole year had passed by during the time Wylen was still in that nursery. We got to know all of the excellent nurses by name, got mini-educations in neo-natal medicine, and best of all, were blessed with an all around healthy and happy baby boy. (the third of 3 great boys) Wylen is now 8 months old, eating and drinking like a horse, playing with his big brothers and giggling his little head off. We still haven't decided whether to go ahead with the tongue operation, we have a lot to think about (especially being in the hospital again). We've met with a surgeon who has performed this procedure several times on BWS children, but we're just undecided as of now. Those beginning weeks were difficult, the hardest time of our lives, but so much has changed in the short time he's been in our lives. I wish I had known about this web-site then, but we went through it alone. My hope is that a new BWS mom or soon to be BWS mom is reading this and can hear from someone who's been there, it gets better and you'll be a stronger person and a stronger mom for your child when it's all over. -Becky June 2001 |
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this page last modified: Tuesday March 27, 2007