Noah is a twin and was born via c-section in 2020. His birthmark wasn’t noticed by us immediately, but was very apparent when the paediatrician came over to carry out the standard newborn baby checks a few hours later. Noah’s birthmark covers the majority of his left leg and foot (front and back).

Noah’s twin doesn’t have a birthmark.

Thankfully, the paediatrician recognised Noah’s birthmark straightaway as a PWS, and was able to reassure us that it wasn’t something more serious. He was reasonably well informed about PSW birthmarks and told us that “Noah could probably have laser treatment to remove it when he is older, or he could use special camouflage makeup that is designed to cover birthmarks”.

We were also quite lucky as we left the hospital with a referral to GOSH for a formal assessment of Noah’s birthmark. I’ve since learned that in the UK, babies with PWS birthmarks are not always referred automatically, and have to go via their GPs to seek a referral to a specialist. So we are very thankful that we were able to speak to a specialist via zoom when Noah was just a few weeks old.

I had never heard of a PWS, and so spent the next few days doing a lot of research. And quickly became very worried that Noah might also have Klippel-Trenaunay syndrome (KTS)

Unfortunately, due to the pandemic, it took a while for Noah to be offered a face to face appointment at GOSH. But when we did have our first appointment we were reassured that it’s unlikely that Noah has KTS as (at the time) there was no notable overgrowth to his left leg (the one which has the PWS). So far, thankfully this remains the case.

When Noah was 2, he was invited to GOSH to have a “laser patch test” to see whether his birthmark might be treatable. We were told that a PWS on the leg area sometimes does not respond to laser treatment. However, after the patch test it was agreed that there had been some improvement, and Noah was offered his first laser session (under general anaesthetic) at GOSH in September 2024 (aged 4), treating parts his shin and calf area.

He has recently had his second session (in March 2025), treating his shin and calf again.

So far, we can not really see much noticeable difference, but we would like to have a few more sessions before we decide whether it’s worth continuing on this journey.

On both occasions, Noah has woken from his GA very distress and disoriented. Complaining of pain and itching under his bandaged leg. He is absolutely fine after 30 minutes and has no pain or discomfort in the evening or days following his treatment. But in the moment when Noah is coming round from the GA and is upset, I do question whether we are doing the right thing, by trying to lightened his birthmark rather than leaving it be.

Noah’s birthmark is unique and beautiful. But of course we do worry that if left untreated, it might become darker, thicker and bleed as he grows older. We have been told this is a possibility. As a family we will continue to research PWS birthmarks and seek to hear and share experiences with other birthmark families.