My names Jack, Dad to a beautiful, happy one year-old girl called Emily. Emily was born with CMN affecting a large area of her scalp and many smaller naevi around her torso and legs.
Minutes after Emily was born, she was placed on my wife’s chest, and I spotted that she had a dark red mark covering around half of her scalp. I pointed it out to the midwife who seemed concerned and asked for one of the doctors to come. A doctor came to the room, and they also seemed concerned but didn’t know what the mark was. By this point the elation we felt at the of the arrival of our little girl was turning to real worry. We were sent to the neonatal intensive care unit where another doctor performed an ultrasound scan on the mark. That doctor told us that he thought it was CMN, but he couldn’t be certain, and Emily would be referred to a specialist. We were sent home, delighted to bring our little girl home and introduce her to her big brother but full of worry and unanswered questions.
My wife and I had never heard of CMN, and the next few weeks were spent searching online for information, most of it sounded very scary. Reading about terms like morbidity and mortality in relation to our little girl was heartbreaking. I found that time really difficult, while completely in love with our new baby girl I was gripped by fear which meant I couldn’t relax and enjoy those precious first few weeks. I know my wife felt the same, but we didn’t want to worry each other or our family so we didn’t always share how we were feeling, which in hindsight wasn’t the best approach.
Emily was referred to our regional children’s hospital but still nobody could give us any clear answers or tell us how worried we should be.
When Emily was around two months old, she was referred to Professor Kinsler at Great Ormond Street and we made the trip down to London. That felt like a real turning point, Professor Kinsler was reassuring, and we immediately felt that Emily was in safe hands. We were also told about Caring Matters Now and introduced to Hannah at the charity. Hannah and the rest of the team provided incredible support. I found great comfort in reading all the personal stories on the website. Where before it had felt like we were the only ones affected by CMN I could now see that there are lots of amazing people out there living happy lives with CMN.
Emily had an MRI scan of her brain and spine which thankfully didn’t find any abnormalities. She also had an operation to remove and biopsy a raised lesion on her scalp. Following that operation, we were told the biopsy results were inconclusive but ‘concerning’ and she would need a further operation to remove a larger part of her scalp. The operations were difficult, we have absolute faith in the surgeons but seeing Emily being put to sleep then leaving her in the hands of strangers was really upsetting. I wished I could’ve swapped places with her, I’m sure all parents in that situation feel the same. Emily was incredibly brave and amazingly came back from theatre both times with a smile on her face, I think she enjoyed being made a fuss of! The raised lesion was biopsied again and after a very nervous wait we found out it was benign and had been fully removed.
Emily is now 18 months old and loves playing with her big brother and all her cousins. She’s happy, healthy and has a big cheeky smile which she wears almost all the time. She has a visible difference in that some of her hair is darker than the rest, we love that about her because it’s part of what makes her Emily.
I feel that we’re over the worst of the worrying now and able to look forward to a bright future for Emily. Having been through it makes us love every minute we spend with our little girl all the more. We’re incredibly grateful for all the help and support we’ve received from Caring Matters Now. And for the amazing care that Emily’s received from Professor Kinsler and the team at Great Ormond Street. I hope that reading Emily’s positive story might provide some comfort to another family just starting out on their journey.
