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| My daughter, Hailey, is four years old and does not have BWS.
When I got pregnant with my second child, a son, I imagined everything would
go as smoothly as my first pregnancy and delivery. Immediately from the start
I knew something was different. I exercised quite easily with my first child.
At seven weeks pregnant with my son I had to stop running. My body just wouldn't
or couldn't take me through the steps. I gained weight very rapidly. With
my first pregnancy I gained 19 pounds. With Tyler I gained 35. Three weeks before Tyler was due to be born, I felt as if I was having contractions. I dismissed them as false labor. I went in for my thirty-seven week check up and discovered I was 3 centimeters dilated and was rushed to the hospital. Tyler's delivery was traumatic. His heart rate was dropping quickly and it took him too long to recover from the contractions. He was delivered vaginally and immediately upon delivery I could hear he had some breathing problems. He weighed in at 7 pounds 12 ounces. My placenta was the talk of the nursery. The nurses all commented that it was the largest they had ever seen. When Tyler was placed on my stomach for a brief 10 seconds, I noticed that his limbs were two different sizes. I was told that he lay in utero too long on one side and that his thinner limbs would "plump up." Tyler was taken to the NICU where he was hooked up to IVs and machines to monitor his breathing, oxygen intake and heart rate. For three days I held and nursed my son among tubes. Tyler had two sets of X-rays taken, a spinal tap, and various blood tests drawn. On day five he was released to go home. Everything was "normal." At twelve weeks Tyler had been seen by 24 different nurses and a dozen doctors, all telling me that nothing was wrong with my child. Finally Tyler was diagnosed with hemi-hypertrophy. Two weeks later, we received the news that Tyler had BWS. We met with a genetic counselor and have had him on quarterly ultrasounds and blood tests. So far, all tests have come out normally. My husband, Tyler and I have just had our blood drawn to see if we have BWS on our genes. Tyler is the most loving child I know. He is snuggly and always quick to give wet, sloppy kisses. He has five teeth only; one on the bottom and four up top. His left limbs are bigger than the right and he weighs in at 26 pounds. He has macroglossia, but it appears that his tongue stays in more now than it did when he was less than a year old. He is a big drooler and spit up a lot as a baby, but so did my daughter, who does not have BWS. I worry for Tyler's future and how he will be treated. Kids can be so cruel. But I figure that Tyler will be bigger than all of the other children so he may be able to handle himself. Tyler's father and great grandfather are very tall so he fits in with the family. The hardest part for me is dealing with the public who make comments on Tyler's tongue or size. I know we have a long road ahead of us and I hope and pray that we will be tumor free. Tyler is the smartest baby and has the most beautiful eyes and smile. I am so blessed to be his mother. Michelle
May 2002 |
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this page last modified: Tuesday March 27, 2007