My name is Melissa and on September 20, 1999 I gave birth to twins ... in Connecticut at 32 and 1/2 weeks into my pregnancy. Madeline Maria and Michael John are now 31 months old and are doing great, however, Michael John has Beckwith Wiedemann Syndrome.

Shortly before I transferred to the High Risk Clinic ...., when I was 18 weeks into my pregnancy I had a Level 2 ultrasound done. It was then that my husband Michael and I were told that (Baby B) Michael John had an omphalocele and that he would need to have surgery shortly after his birth and that his sister (Baby A) was fine. I developed high blood pressure caused by toxemia by week 28 and it grew progressively worse. As my contractions grew closer, I went to emergency and gave birth that same day. I had a normal vaginal delivery.

He had a successful surgery shortly after birth to correct his omphalocele which we were told was no bigger than a nickel in size. The surgeon even made him a cute bow-tie belly button when he closed him up.

Our son, Michael John wasn't clinically diagnosed with Beckwith Wiedemann Syndrome until he developed slight hypoglycemia two days after his birth while he was in the Newborn Intensive Care Unit. The Hypoglycemia basically resolved itself and he has had no problems with it ever since, but it was brought to our attention that he had an enlarged tongue and liver. He also had creases behind his ear and stork bite on his forehead.

It was hard to tell that his tongue was large because he had been hooked up to respirator when his father and I first saw him in his incubator in the NICU. He looked proportionate although the Genetic Doctors told us that a symptom of BWS may include disproportionate growth. It seemed like every time my husband and I went to the hospital to visit the twins all the attention was on Michael John. He became the new statistic.

He finally got to come home from the hospital after his 28 day stay. He stayed a week longer than his sister because, although he was up to 5 lbs in weight he had a hard time sucking the bottle because of his enlarged tongue. This is something that his father and I had to work on with the help from occupational therapists. We were able to help him by squeezing his cheeks and pushing his jaw up while he had his month on the bottle. Within the next few months he managed to suck on his own. We look back and don't remember what kept us going those long winter nights. Michael John sometimes took an hour and a half to finish just 6 oz. of formula.

At any rate, he has had abdominal ultrasounds every 3 months since birth along with blood test. We thank God each time we get positive test results. We notice more and more that his big stomach (caused by his enlarged liver) is getting smaller and less noticeable as he grows.

Michael John is now 33 months old and weighs at least 38 lbs and is over 38 inches tall. He is a big boy but not unusual for his age. His tongue is still considerably bigger but he has much more control over it as he grows. He has had speech therapy for the last two years. When he was a baby he had to see a feeding specialist because he had trouble chewing his food and would often gag if he put too much in his mouth at once. We can to limit him to pureé food, and softer foods until he eventually learned how to control his tongue and chew his food properly.

He will continue getting speech therapy starting in the Fall of 2002 at the Early Childhood Center (part of the ...., CT. public school system). We feel that although Michael John tries very hard to communicate, he has a difficult time expressing himself because the words don't come out right. It is very hard to understand what he is saying unless you know him. We see him getting very frustrated, especially lately and would like to know about other peoples experiences with children with BWS. We believe that although Michael John doesn't have any breathing problems caused by his enlarged tongue, he may benefit from having a tongue reduction sooner than later because, as I mentioned, he is having a difficult time getting his words out.

Michael John is a happy little boy with an abundance of personality. He's very close with his sister and is very popular among children in the neighborhood and at pre-school. We thank God each and everyday and consider ourselves truly blessed to have these beautiful children. Michael John will need some help with his speech but we are confident that he will be just fine in the long run.

We just thought it might be helpful to share our story with others and we are very open to your advise and would love to hear your stories as well. Please feel free to email me at melissa@designsite.com

Sincerely,
Melissa

June 2002