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.