Our daughter, Miranda, was born December 9, 1994. My pregnancy was very hard as I was sick the entire time. I also had polyhydramnios and toxemia. At about 6 months along I was full term size and kept going into labor. Finally at 33 weeks I was put in the hospital and had fluid drained several times to stop labor. At 35 weeks I had a c-section. We discovered Miranda had an omphalocele following an amniocentesis at 3 months. I was very worried, scared and upset because we had already raised and lost a disabled child. At birth Miranda was taken to surgery to repair her omphalocele which was successful. All I noticed when she was shown to me was that she had a big mouth. I now know her tongue was what was large. The surgeon told me that all went well but that she had a large tongue which would be nothing serious other than eating problems. I was worried sick. I couldn't see her tongue because she was on a ventilator! Miranda also has slight hypoglycemia but it basically resolved itself and she had no problems with it.  She stayed in NICU for 16 days, became a feeder and came home on Christmas Day. I had heard of BWS from a nurse in NICU and she showed me an absolutely awful black and white photo copy of an article showing about 6 children with BWS standing in a line. One of the first lines in the article stated that children with BWS are moderately retarded. I was very alone at the time and spent many nights up crying...feedings would take awhile although she was never a choker nor had any breathing problems. She had an enlarged tongue, omphalocele, low muscle tone, "stork bite" on the forehead, ear creases, low blood sugar at birth and an odd shaped back of her head. She was also very muscular looking although she weighed 6 lbs 7oz at birth and was 19 inches long. The first year of her birth was definitely NOT one of my best years!!! She is now 5 years old and doing great. Her organs are not enlarged but we continue to have her ultrasounds done quarterly. Her speech is fine, no therapy needed, and she can contain her tongue except when she in concentrating or relaxing and then it lies on her bottom lip slightly. She does have a slight lisp and while she contains her tongue while speaking, it is evident that her tongue is enlarged. She kind of pulls it back while talking. We have always been torn over tongue reduction surgery and we continue to struggle with it. Miranda was seen at the BWS clinic when it came to Seattle and we were told at that point to wait and see what happens once she enters Kindergarten, which will be this fall. She is followed by Children's Hospital's dental department and they are wonderful. It will be nice when we all as parents have data to support making these type of decisions. After reading about the tongue reductions on the message board we emailed Dr. Marsh and he will be looking at her x-rays soon. Based on what he knows now he would have recommended Miranda have a tongue reduction at 18 months. That is how much information has changed! Anyone with any information on later age tongue reductions, please email me at FRASIERJK@aol.com. I would love to hear from you. Miranda will be entering Kindergarten this fall and she is very excited. She loves swimming and gymnastics and both are very good for her. She had low muscle tone and when she crawled she did the combat crawl and didn't walk until 13 months.  Miranda is a joy and is loved dearly by her brother and mommy and daddy. She has the cutest smile and so many people tell me how cute she is.  Her personality definitely shines. She loves to draw and paint (and use scissors...and not always on paper) so our house often looks like a pre school room. 

Kathy
June 22, 2000