Dear Friends,
On Friday, April 24th, at 3:51 p.m., I gave birth to Samuel Connor Paddock. He was 8 pounds 11 ounces at birth and was 19 1/2 inches long. After he was born the nurses noticed that he had a purplish discoloration, mainly on his back and lower body. His right hand and arm was also significantly larger than his left one. His right thigh and calf were much larger than his right one, and his left foot was larger than his right.The second toe on his left foot was also much longer than the rest of the toes on that foot. He was taken to Cardinal Glennon Children's hospital by ambulance a few hours after his birth and admitted into the neonatal intensive care unit. The preliminary diagnosis is Klippel Trenaunay Weber syndrome, a rare congenital condition that affects the blood vessels. Symptoms can include the "port-wine" staining, limb hypertrophy (which can affect the soft tissue and bones), and complications of the lymphatic system. The liver and brain can also be affecteddue to abnormal capillary growth in those areas.
The good news is that Samuel does not have any of the markings on his face. The doctor said that typically children with the marks on their face have developmental difficulties. On Monday, he will have an abdominal sonogram to check his liver and kidneys, as well as a brain sonogram. My guess is that he'll be covered with a lot of goo by the time he is done with that. They will also perform a bone scan due to the increased size of his toe and foot. This will probably be repeated in the future as limbs can continue to grow at an increased rate. I helped the dermatologist take pictures of the discoloration on his body, and we will talk with the head dermatologist tomorrow along with a geneticist. There is no known cause of Klippel Trenaunay Weber syndrome, and no way to detect it in utero. His heart rate, blood oxygen level and breathing are all normal, and other than the physical things noted above he is a healthy, happy baby. We will update further as we find out more
Thanks for your prayers,
On Friday, April 24th, at 3:51 p.m., I gave birth to Samuel Connor Paddock. He was 8 pounds 11 ounces at birth and was 19 1/2 inches long. After he was born the nurses noticed that he had a purplish discoloration, mainly on his back and lower body. His right hand and arm was also significantly larger than his left one. His right thigh and calf were much larger than his right one, and his left foot was larger than his right.The second toe on his left foot was also much longer than the rest of the toes on that foot. He was taken to Cardinal Glennon Children's hospital by ambulance a few hours after his birth and admitted into the neonatal intensive care unit. The preliminary diagnosis is Klippel Trenaunay Weber syndrome, a rare congenital condition that affects the blood vessels. Symptoms can include the "port-wine" staining, limb hypertrophy (which can affect the soft tissue and bones), and complications of the lymphatic system. The liver and brain can also be affecteddue to abnormal capillary growth in those areas.
The good news is that Samuel does not have any of the markings on his face. The doctor said that typically children with the marks on their face have developmental difficulties. On Monday, he will have an abdominal sonogram to check his liver and kidneys, as well as a brain sonogram. My guess is that he'll be covered with a lot of goo by the time he is done with that. They will also perform a bone scan due to the increased size of his toe and foot. This will probably be repeated in the future as limbs can continue to grow at an increased rate. I helped the dermatologist take pictures of the discoloration on his body, and we will talk with the head dermatologist tomorrow along with a geneticist. There is no known cause of Klippel Trenaunay Weber syndrome, and no way to detect it in utero. His heart rate, blood oxygen level and breathing are all normal, and other than the physical things noted above he is a healthy, happy baby. We will update further as we find out more
Thanks for your prayers,
Kara
