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| Dear Julie, My name is Tanya and I have a two year old daughter, named Taylor, with BWS. I was reading the other stories of families dealing with this syndrome and felt that I had to share my story. When I found out that I was pregnant with Taylor I was extremely nervous because of the problems that I had with my son, Trentin. He had brain surgery at 1 1/2 years old due to a dermoid tumor they discovered and he also has congenital scoliosis. I wanted to have a level 2 ultrasound done at 20 weeks of pregnancy to check this baby's development with the brain and the spine. Fortunately, both were fine. But they found another problem. She had an omphalocele that they thought contained the liver. I had a amnio done first to make sure that she didn't Downs Syndrome. That test came back normal. They couldn't find any other abnormalities with the chromosomes at that time so we weren't too concerned from that point on. Because of the omphalocele, I was considered high risk and was going in to the doctor's all the time. Towards the end of the pregnancy, on ultrasound they thought that her tongue looked a little big because she kept sticking it out all the time. They just mentioned BWS and said that they couldn't diagnose it until she was born. Immediately I went on the internet and did some research of my own. The things that I saw were scary. They showed some pictures of different types of omphaloceles and all the conditions that go along with BWS. I kept a very open mind because I knew the stress was getting worse. I knew that I was going to have a c-section due to the omphalocele. I was very nervous about this since my first child I had through natural child birth. My due date with Taylor was January 25, 1999. I went to the doctor for a regular OB check on December 28, 1998. I was already dilating so they admitted me and decided after a second amnio that Taylor's lungs were developed enough to survive on her own. On December 30, 1998, Taylor was born and it was very emotional. I was very difficult because neither myself nor my husband knew what to expect. It seemed like there were 100 people in the delivery room with us. After she was born they a pediatric surgeon in the room also who looked at her right away. They bandaged up the omphalocele with gauze and after about 25 minutes, they brought over to where I was so that I could see her before they took her away. She was in an incubator so it was hard to tell what she looked like. Taylor was born about four weeks early and weighed 6 lbs. 13 oz. She was tiny - or so it seemed! An hour after I came out of surgery, they took me over to Children's Hospital in .... (I was at .... - next door to Children's) through the tunnel and I was on morphine so I don't remember hardly anything. I do remember when we got into the NICU she hooked up to a lot of machines. They did have her on a ventilator because they didn't know if she could breathe on her own. Her omphalocele was repaired that day about 4 hours after she was born. We found out right after birth that the omphalocele contained only some of her large and small intestine, not her liver like they originally thought. The surgery went really smooth. We were in the hospital almost 3 weeks. We would have went home after 2 weeks but Taylor would not eat. She had an enlarged tongue which made it hard for her to latch onto any nipple. After we went home, they decided to do the tongue surgery. Taylor was about 3 1/2 months when this was done. I now thank god that we had the doctors to do this surgery. It did wonders for her. She started latching onto things with no help at all. By the time that she was eating solid foods, we had no problems. Taylor is now 2 1/2 years old and is talking. It's still really hard to tell if her tongue will interfere with speech. It is still really thick, just a lot shorter than before and the doctors say that they cannot do anything with the thickness of it. Taylor has been a normal and healthy little girl who likes to beat up the other kids, especially her 5 year old brother! I can't tell if her tongue will affect her later in life but I can say that the surgery did wonders. So depending on the family, I would recommend this surgery for those families debating about it. Taylor still has the stork bites on her forehead like so many other people I have read about but they lightened since birth. She also has the ear pits and creases and a few other sets of dimples on her body that I have just recently decided that they are part of the BWS. I thank you for reading my story and hope that some of the decisions I have made will help other families.. Good luck and God Bless you. Tanya, Minnesota
May 2001 |
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this page last modified: Tuesday March 27, 2007