In March 2010 our second son Mats was born at 33 weeks in the university clinic of Antwerp, Belgium. Immediately after birth Doctors saw Mats was different. His right leg and foot, as well as his right buttock were very thick. He also had several red spots on his back. His right testicle is bigger than the other. But he immediately breathed on his own, reacted good and ate very good. After several emotional days of waiting in anxiety, many scans and specialists the vascular surgeon diagnosed him to have Klippel Trenaunay syndrome. After a month he could leave the hospital and we could come home. As months went by the leg became bigger an bigger and the hypertrophy made that he could barely move his leg or knee. Since the arteriovenous malformations linked to KTS were not present the diagnose of KTS became doubtful.
In July 2010 doctors discovered another problem by coincidence. Mats’ liver had become very big and contained 15-20 hemangioma. The biggest one had a diameter of 7 cm. An urgent liver-transplantation seemed the only solution and we were sent to Genth’s university hospital for the operation. In Ghent the doctors started a treatment with a relatively new medicine and the hemangioma started to reduce gradually. Until now Mats takes the medicine and the hemangioma reduced to 2-3 pieces of less than 2 cm in diameter. He still has a very big liver but no transplantation and liver-donor were necessary.
In October 2010 we were send to the university clinic of our capital, Brussels, to treat the hypertrophy of his leg and buttock; His leg had become very thick, and the growing fat and muscle had made his leg very hard. The treating surgeon in Brussels diagnosed him to have CLOVES for the first time. In december 2010 and march of this year he had a liposuction at his leg and buttock in Brussels. He was only 9 months old at his first liposuction.
During the months to follow he started to crawl and made a lot of progression. He’s very smart and very curious to discover the world. Meanwhile we went Jiddeke Van den Camp, clinical geneticist at the VU Medical Center in Amsterdam, the Netherlands, since she was cowriter of the first paper about CLOVES. She diagnosed Mats to have some major symptoms of CLOVES, but also some of KTS and also some of another syndrome “hemihyperplasmie lipomatosis”.
We hoped to have a summer without to many worries until his treating doctor in Ghent called that a marker for cancer in his blood was too high and this could indicate he has cancer. An urgent NMR-scan was organized to search for tumours on august 30th. They luckily didn’t found tumours in his liver as feared for but they did found another “undefined” tumour of 2 by 3cm in his belly. It’s not in an organ and seems to be reasonably easy to remove. The operation is planned for sept 12th. The doctors don’t know what will come out, they have no clue… We have very good doctors and clinics but they simply don’t know CLOVES and they have no time or funds to learn more about it.
Since we’re becoming more and more desperate as Mats, who’s doing so well in his daily live, has so much medical problems we hope to find somebody who can confirm the diagnoses of CLOVES and maybe has some experience with all these other problems we experience… Is this linked to CLOVES or not? What else can we expect? Are there other parents with kids with CLOVES that also have problems with liver or other “undefined” bumps… Are there people from Europe visiting this forum?
We want to thank the people behind this website to enable us to do our story and maybe find some support, emotional and medical…
Gert and Lieve, father and mother of Mats