Lilah's story

Lilah was born with a venous malformation which will not involute and unfortunately will grow with her as she gets older.

As soon as my gorgeous girl was born, I noticed a mark on her right cheek. In the first few weeks of her life I kept going back to the doctors, who kept telling me that these were forceps marks from her delivery. Deep down I knew that this wasn't the case, especially as I noticed that it was spreading and getting darker around her eye and lip. Looking back, it was quite obviously a birthmark - but one that I couldn't identify through any websites that I was trawling through.

When Lilah was six weeks old, we had an appointment with a paediatrician at our local hospital for something unrelated, and I took the opportunity to ask him what this mark was. He thought it was a haemangioma, which would go when she was 5-10 years old. It turns out that he was wrong, and at the time something was telling me that his diagnosis wasn't right, especially as it didn't look like any type of haemangioma I had seen.

That was the moment I took control and started doing it my way during Lilah's first year.

I found support from a great bunch of ladies on the BabyCentre forum, which armed me with the information I needed to get my local GP to refer me to a birthmark specialist centre. Because he knew Lilah had just had her hip check at the local hospital, I told him a white lie by suggesting that the paediatrician there had told me to refer straight to Great Ormond Street Hospital. I had all the names and details for GOSH ready there and then, and he did it straight away. I also emailed one of the nurses at GOSH and sent photos. She called me first thing the next morning confirming that it was not a haemangioma but a venous malformation.

Our appointment date came through pretty quickly and we were seen within weeks, but our meeting with GOSH wasn't exactly what I expected. We were told to 'wait and see' and come back in four months for Lilah to have a MRI scan.

I decided to contact a specialist myself without waiting for the scan. Anybody who has trawled the web as I did then would hear about Dr Waner, an American who specialises in vascular malformations. For many years, he has been working closely with a small children's hospital in Berlin (Germany) that has a great vascular anomalies team. Dr Waner ( responded to my email quickly. He explained his belief that early intervention would be essential to the long- term management of Lilah's VM, and asked us to meet him in Berlin at the end of the month for a consultation.

We first went out to Berlin when Lilah was 12 weeks old. She is now two and half, and has had countless treatments (little trooper!). I must say that each time it doesn't get any easier. Her treatment is going well, but it will be ongoing throughout her life. She has had laser therapy and also a form of sclerotherapy. We now have transferred Lilah to Alder Hey children's hospital in Liverpool, where she is under the care of the most fantastic consultant, Mr. Se Hwang Liew who leads the Vascular Birthmark Clinic. He has restored my faith in the NHS and will hopefully see Lilah through to adulthood.

Through all of this, Lilah has been amazing - she doesn't know how tough this has been. She's a very happy, funny, confident little girl who makes my life complete.

Lilah is currently having laser treatment, which is managing her venous malformation well. We are looking into bleomycin treatment, and that may be her next step. I can go into lots detail about all of her treatments, so if anyone would like to find out more please just ask.

Reading back through this, I haven't really touched on the emotional journey I have been through. At the beginning I was angry, and hurting so much; I couldn't understand why my little girl had a facial birthmark. This soon became fear and dread for Lilah's future. I wanted to hide away. I remember them as 'the black days'. I know I went into a deep depression about it, putting on a front to the world, but falling apart inside as it was all out of my control. Luckily my bond with Lilah did not suffer and I don't feel I have lost out on her as a baby, but I have battled lots of different types of emotion. Through all of this she has kept me going, and kept me fighting to get the best possible treatment for her.

I feel better about it now, though I still have flaky moments quietly. Acceptance takes time, but as soon as Lilah smiled and started growing and becoming her it became so much easier.

My advice for any new mothers going through something similar is that knowledge empowers you to take control, but most importantly - TRUST YOUR INSTINCT. If you do not think or feel something is right, then question it immediately and keep pushing.