Sofia’s StoryOn the evening of the 7th July 2017, our beautiful daughter Sofia was born at Liverpool Women’s Hospital. I had an uneventful pregnancy and a straightforward birth and we were completely unaware that Sofia was going to born with a giant CMN. When she was born, the midwife explained that she had a birthmark. I thought ‘that’s ok!’ but I saw my husband’s face and I knew it was something unusual. Sofia was born with a bathing trunk nevus which covers the bottom half of her back, wraps around under her belly button and partially covers her buttocks and thighs. I asked if she would be ok and the midwife said yes but that she had only ever seen a baby with this once before. My husband and I naturally ‘googled’ Sofia’s symptoms and already had an idea she had CMN by the following morning. This was confirmed by the paediatrician, who gave me a sheet he’d downloaded off the internet and told me that she was well and could be taken home, but that the main concern was Sofia developing melanoma in early childhood. My husband had gone to get the car seat at this point, and I sat with my newborn baby and a midwife and cried my eyes out.

When we got home, it was difficult telling our eldest daughter about Sofia’s condition – I didn’t want her to be scared so I explained that Sofia had been born with a large birthmark and that it wasn’t infectious and I encouraged her to touch her skin. She was shocked, but continued to instantly be very loving towards her long awaited for little sister.

The weeks passed, and we waited for an appointment at Alder Hey Children’s Hospital for what felt like an eternity – we had so many questions.
In her first few weeks of life, Sofia had blood tests, photographs and an MRI scan. I must have cried solidly for 2 weeks after her birth – my husband held me together. It got to the point where I decided I had to stop crying- my gorgeous little baby was only going to be little for so long and I had to try to enjoy it. We wanted to celebrate the birth of our daughter so we decided to initially keep the news to ourselves (with the exception of grand parents.) We also decided not to say anything to anybody because in all honesty, we didn’t have a clue what was going on! We wanted to have the full facts.

I found ‘Caring Matters Now’ as a result of researching the condition. Living in Liverpool, we couldn’t believe that Jodi (who founded the charity) lived in Liverpool too. I contacted Jodi and a few days later we met her – she has been so supportive and I know Sofia will look up to her as she grows up.

It was so hard at the start – ‘googling’ is the worst thing you can do, but also it’s natural to be curious. We read about the main 2 complications of giant CMN – neurological and melanoma. We have tried to remain positive that Sofia will be ok and live a full and healthy life and we count our many blessings as she is a lovely baby.

We were referred to Dr Kinsler at GOSH in September 2017 and she answered every single question we had. From her MRI scan, Dr Kinsler said that Sofia’s spine was clear but that she had one small mole on her brain, but because she isn’t showing any adverse effects, Sofia may just have a little developmental delay and will also be seen by a paediatrician once a year until school age.

We have now started to gradually tell our closest friends and their support has been amazing. We are hopeful that through the research that is on-going at GOSH, a breakthrough will be found in terms of treatment. For now, our motto is to be ‘positive, proactive and pragmatic’ and to try and raise as much money for Caring Matters Now as possible.

Sofia is now 6 months old and behaving as any baby does – she is a really pleasant baby with a gorgeous smile! We are being optimistic about the long term and we are going to teach Sofia to be super proud of herself and encourage her to be resilient. I’m sure that by attending the Caring Matters Now support days, Sofia will make friends for life and she will not feel alone. If you are reading this as a brand new mum to a child born with CMN, please remember that you didn’t do anything wrong in your pregnancy and it was just a chance event. Try not to worry and get a referral to Dr Kinsler – she is a brilliant doctor. We count our blessings for such a lovely baby every day.

Sofia is now 4 years old and she is doing really well. She has just started primary school, and the school have been fantastic and the support resources from the Caring Matters Now website have really helped her teachers understand the condition. She loves school and she has begun to tell the other children about her special birthmark and her positive attitude towards it is starting to come through. She has recently had an operation at GOSH, which I don’t think any parent or child looks forward to, but it was in her best interests and we have tried to see it in a positive way. Sofia once again has shown resilience in this situation and is doing really well. The team of surgeons at GOSH, and the nurses we have seen at follow up appointments for dressings at Alder Hey, have been absolutely fantastic and made Sofia feel comfortable and special, and also put our minds at ease.