Alfie (United Kingdom)
A personal story
On the 5th of September 2003 our son, Alfie was born.
He was perfect. A home delivery, caught by his fourteen-year-old sister Tess.
Alfie was checked by the midwife and she left us, congratulating us on our sixth child. We had both been anxious over the pregnancy as I was 42 years old but everything had been straightforward. As the day progressed, marks became apparent on Alfie’s right-hand side. I hid them, hoping they would go away. They didn’t. After a visit by the midwife, Alfie and I were admitted to the children’s ward. We were so extremely fortunate that the resident paediatrician was as able as he was. He immediately said he felt sure that it was a vascular malformation but that he would admit us for observation. Nothing came to light overnight and we were discharged. I was asked to bring Alfie in the next day where he was seen by a dermatologist and two students. By this time, I had searched the internet for similar conditions and had guessed that Alfie had CMTC. We were subsequently referred to a specialist in Alder Hey Children’s Hospital who confirmed the diagnosis. We were left with another appointment in 6 months and no more information than that.
I joined the CMTC organisation who were so incredibly supportive and answered many of our questions, of which there were many. Will his brain be affected? How can we check his kidneys? Will he walk? The list was endless.
When we saw the dermatologist (a different one) he said that he didn’t know anything about the condition really and thought it best to discharge us. We were panic-stricken. However, we have managed very well. Alfie’s growth is normal, his development is normal and his organs appear to be unaffected. We have spoken to Alfie about his condition and if people ask, he can tell them he has CMTC which means he has marks on his legs, stomach, arm and hands. He is completely nonplussed by this. We are so grateful for the support of this organisation. Alfie meets other children with the same condition and he doesn’t feel frightened at all about it. It’s just part of him. He is now 5 years old, came second in his running race in school and is able to speak both English and Welsh.