I am the mother of a beautiful 24 year old daughter.  When she was born I remember commenting on how big her tongue was and how huge she was.  She weighed 9 lbs 9 oz.  It wasn't until the next day that the her doctor came to talk with me and told me what he knew about BWS.  Still to this day, I wish he had waited to talk with me when my husband was present.  I was only 19 years old at the time and needless to say, a bit overwhelmed.  Her tongue was very thick and did stick from her mouth constantly.  Still she was able to breastfeed and suck a bottle as needed.  She also was born with an umbilical hernia and dislocated hip joints.  The hernia corrected itself, and we used triple cloth diapers for about 3-4 months to get her hip back in place.  For the first 6 months of her life, she was an extremely fussy baby.  I had a lot of pent up feelings about possibly having done something wrong that caused her to be born with this birth defect, and additionally, her colicky nature didn't make me feel like a very good mother.

The information age had not exploded 24 years ago like it has today.  Any information I received, I got on my own.  And that information was few and far between.  By the time that my daughter was about 6 months old it was evident that she had a leg length discrepancy.  My first appointment with an orthopedic doctor was horrible.  He basically told me that she should begin to wear a lift on her shoe as she begins to walk.  The future needs he couldn't be sure of but that it could even result in a need for amputation of a leg limb if the difference became out of control.  I could not believe that a Doctor would say that to a young mom holding her baby in her arms so I looked into taking my daughter to the Shriner's Hospital.  For the next few years we took her for a 20 hour round trip drive every 6 months for her orthopedic appointments.  They recommended NO LIFTS on the shoes because they felt it was more important for her to compensate for the 1 inch difference. They said that she would need her back checked often, but to let her go without the lift on her shoe.

At about 10 months she had surgery on her tongue.  It was obvious that this surgery wasn't done every day.  There seemed to be quite a debate about which way to approach this.  The suture was made in the middle of the tongue, which took out the bulk of the thickness. 

She began to walk and talk, sing and dance.  She was a big baby.  Always in the 90 plus percentile for weight and height.  Everything was going smoothly.  At about 18 months her doctor said that she needed some xrays/ultrasounds. I don't remember really understanding why.  I remember thinking that whatever she needs just do it.  Whatever they were looking for, they didn't find. Then, when she was 2 and a half I took her to her doctor for a routine check up.  She had not been sick for over 6 months, and she was doing so well that I wanted to show her off.  That was the day that I will never forget.  When he palpated her stomach, he became very talkative with a lot of questions about her recent bowel/ urinary habits.  All I kept saying was that she was fine.  He told me to take her to the Children's Hospital that he wanted her admitted for some tests.  On Thanksgiving Day in 1978 she had surgery for Wilm's Tumor diagnosed as Stage V.  She had a removal of her left kidney, they saw spread to her right and to the lungs.  They immediately began chemotherapy and radiation.  Our lives were in a whirlwind.  I remember looking out hospital windows and watching other people going on with their normal lives.  I knew that mine would never seem normal again. 

She had 15 months of chemotherapy, but I know that I cried more than she did.  Her suture became very infected about 30 days after surgery.  My tears dropped on her face as I held her down and she screamed in the hospital when the doctor put his instruments through it to get the infection out.  I begged him for anesthesia but he said it would do no good.  Finger sticks and IV's became routine for her.  Never for me.  And it seemed we could never drive home from getting her chemotherapy without having to stop to have her throw-up.  As the months went on, I began to look at those "throw up"  sessions as a way for her to get rid of her cancer; I had a mental picture in my mind and I began to welcome it. Those 15 months she lost weight and her appetite.  I put food on her plate in the shape of a face and she wouldn't even look impressed.  When she had her 3rd birthday, I feared it would be the last one I would spend with her.  She looked so pale, thin, and fragile. Toward the end of that 15 month treatment she started to become more perky. I found that she loved soft warm pretzels and she nearly lived on them.  She was bald, but her mouth sores were nearly gone and she had ENERGY.  At the end of her treatments they could find no signs of cancer.  What a glorious time it has been since.

Rachel, still gets her check ups yearly at the Children's Hospital .... in ...., Virginia.  Today she is about 5'8 inches tall and thin and very fit.  She exercises often, and takes great pride in her health and great looks.  She played basketball and volleyball in high school.  She was named the best city high school female volleyball player her senior year.  She played volleyball for her college team and received her Bachelor's degree in Fitness Physiology.  And I, her mom, just saw her marry 6 months ago.  Rachel has come through it all with only one abdominal scar.  I on the other hand, have a few more scars.  But God is good.  He sees us through it all. 

Cheryl
March 13, 2000