Martha's story

Martha was born in August 2009 in an easy water birth. The doctor who discharged us from hospital mentioned that the very faint pale shadow on the right of her forehead was just a pressure mark from the birth canal and would disappear. She also had a tiny network of red blood vessels on her left cheek. Over the next couple of weeks, the pale shadow started to go red, which we assumed was the bruise coming out. But then the vessels on her cheek started spreading and going redder, and we noticed the same sort of marks appearing on the back of her neck and down behind her ear. 

When we mentioned it to the midwife, she casually told us that the baby must have port wine stain birthmark and that we should take her to the GP. This was the first mention of this redness being a birthmark and came as quite a shock. 

At the GP surgery, they were evidently concerned about meningitis and sent us straight to paediatric A&E, where we had an agonising wait to find out what these marks were. The hospital concluded that they were birthmarks but couldn't be sure of what kind, so we were sent home with a referral to Great Ormond St. 

A few days later, we had a call from Great Ormond St. We had emailed pictures of Martha to them and a nurse called to tell us that her birthmarks were called haemangiomas, a type of birthmark that would fade with age. 

So started our journey. We went in for a battery of tests that looked at every part of Martha's body, from her heart to her brain, to check her suitability for treatment. Unfortunately, her MRI scans showed that she has a narrowed carotid artery in her brain, which is one of the features of a syndrome called PHACE (each letter stands for a part of the body that may be affected by the syndrome). In retrospect, we realised this what they had been looking for. 

A week later, Martha developed breathing problems and after various visits to A&E, she eventually had a bronchoscopy (in which a camera is inserted down the airway under general anaesthetic) at Great Ormond Street. It transpired that she had a subglottic haemangioma, which was blocking her airway by 80-90%. After trying to control it with steroids, the decision was taken to operate to remove it when she was 4 weeks old and that issue is now thankfully resolved. 

After four months, the steroids gave Martha high blood pressure, so she came off them and started on Propranolol when she was six months old. The change in her marks was almost instantaneous - they immediately became softer and less angry-looking. The steroids had stopped the marks growing too aggressively, but they had still become very red and raised. 
As the months went by, the marks began to disappear at an astonishing rate. She is 3 years old now and they are much improved. I would estimate they have lightened by 80% or more. 

It has been a tough rollercoaster of a journey, from the initial shock and hospital stay to coping with the issues that come along with substantial birthmarks over a quarter of her face. As her mother, I found it hard when people stared, but I've come to realise that human beings are just naturally curious and that I would probably have looked too not stared, but looked. There will always be the odd person that looks a little too long, but mostly people are kind and aren't thinking anything mean. It's important not to project things onto a stranger's expression. We also quickly concluded that our confidence and attitude would dictate Martha's confidence and attitude, and that she needed us to be unfazed. To us, she has always been our wonderfully beautiful, perfect baby and I hope that this will translate into her growing up to be a self-assured and resilient little girl, whose birthmarks (or what remains of them) just make her more of an individual. 

In those first few days and weeks, there were a lot of tears and worry, but now it's a long-distant memory. We still go back to Great Ormond St every six months and are now considering whether to treat the remains of the birthmarks with laser, so the journey isn't over yet, but now we can just enjoy the mischievous and loving little girl that she is.