Strawberries And Cream

21st June 2008

One in three people has a birthmark – but for most it’s hardly visible, and easily ignored. For some, however, it’s disfiguring, distressing, painful and occasionally dangerous.

Jill Glenn meets bushey toddler Cosima Wiltshire, and her mother, Lindsay, to find out about living with a condition that the rest of the world just won’t ignore.

I’m not usually apprehensive about first encounters with young children – but I admit to feeling slightly nervous before meeting Lindsay Wiltshire [Weinstein], and her small (and, as it turns out, thoroughly adorable) daughter, Cosima.

Will I notice Cosima’s birthmark? Answer: yes, of course; it’s impossible not to. Will it matter? Now that one’s harder…

The birthmark in question is a haemangioma, on her right cheek. What you see is basically a group of twisted capillaries, that extends under the skin and protrudes through the surface, a swelling inside and out – round, pinkish-red and certainly prominent.

It’s very easy for a birthmark to become a defining factor – our faces establish who we are, especially in a culture obsessed with physical perfection – but what you really notice about Cosima is her striking chestnut hair, her serious eyes and her sweet smile. Within seconds, the haemangioma just doesn’t catch your eye… because what you’re connecting with is a child with an engaging personality and a life that is about more than a mark on her face. She likes horses, and walking on walls, and cuddling a toy Dalmatian called Jasper, who goes everywhere with her (and actually exists in triplicate, so that after a spell in hospital Jasper 1 can be whisked away to have all the germs ‘nuked’ out of him, while Jasper 2 surreptitiously replaces him; Jasper 3 is an essential ‘what if’ fallback). When I meet Cosima her main concern is that she’s lost her slippers; she peers behind the sofa and into the cupboards before shrugging her shoulders and settling down to play. Like a normal child. Because she is a normal child.

If only life were that straightforward all the time.

Cosima has other haemangiomas – on her chest, for example, and on her thigh, plus one inside her stomach which bleeds and exacerbates her reflux condition – but, of course, you don’t see those. The one on her face, however, seems to make her public property. It creates scenarios that her mother and grandmother, not surprisingly, find almost intolerable. “She’s my baby and I think she’s beautiful,” says Lindsay, “but it’s very painful when other people stare.”

There are questions in the supermarket, pointed fingers in the park, accusations of neglect in the street. Strangers demand “What’s wrong with that child?”, “What have you done to her?”.

Lindsay has resorted to producing small laminated cards that describe Cosima’s condition and treatment, which she hands out when the conversation becomes just too intrusive. She refers too, in these, to the difficulties of leading a normal life with strangers asking such inappropriate questions, and ends “You are not the first, nor will you be the last to have acted upon your curiosity at our cost.”

Her frustration, her hurt, is understandable. On the whole, though, Lindsay is bright, positive, cheerful and infinitely calm around her child. It’s an attitude she’s had to cultivate over two years of hard physical and emotional work managing Cosima’s care… trekking up and down to Great Ormond Street Hospital (GOSH), to which they were referred when the baby was five weeks old; administering drugs; changing dressings (a process that could take up to two hours); anticipating hazards and dealing with them. Cosima’s experience has been unusual, with some serious complications. Most haemangiomas diminish naturally, usually by the time the child is at school, and often leaving the barest minimum of scarring. Others, though, grow over the lips, risking permanent twisting, or over the eyes, threatening sight.

Strictly speaking, to describe haemangiomas as birthmarks isn’t entirely correct. They generally aren’t visible at birth, but appear within a few days or weeks. Like all birthmarks they’re just a quirk of nature, a developmental abnormality of tissue or vein; in effect, haemangiomas are benign tumours. They’re more common in girls, in twins or triplets, and in premature babies. Cosima was three weeks early, born sweetly and easily at home, and the life she was about to lead was not immediately apparent. As a newborn child, she had the smallest evidence of a mark on her cheek, little more than a pinprick. Within a few days it was the size of Lindsay’s little fingernail, slightly raised, but flat and just darker than the surrounding skin. “Oh, it’s a birthmark,” said her mother idly, little realising how this tiny blemish, with a name as innocent as ‘strawberry mark’, would come to dominate her and Cosima’s life. A week or so later it was blood red, “and growing as we looked at it,” recalls Lindsay.

There can be little that is more scary than waking to feed your baby in the night, and finding her sheets and mattress soaked with blood pouring from her face. Or to uncover on a child a wound so oozing, so stinking, that you all but throw up.

The bleeding incident happened when Cosima was four weeks old; she lost a third of her blood, and was lucky not to need a transfusion. As a result the wound became badly ulcerated, and required intensive daily treatment. (Later she also suffered a couple of doses of MRSA, acquired at one of the London hospitals whose standards of hygiene and knowledge of haemangioma were sadly lacking.)

Enter a team of saints and heroes – Professor John Harper, Dr Samira Syed, Chief Nurse Specialist Jane Linward – to be found at The Birthmark Unit at GOSH, whose help and support and medical knowledge have saved Cosima’s life and Lindsay’s sanity. “Is she in pain?” Lindsay asked Jane Linward, on their first referral. “She’s in agony,” was the uncompromising reply. The solution was morphine, for seven months, in an attempt to give Cosima some sort of pain-free life.

Many marriages don’t sustain the pressure of a child in need of special medical care; anecdotally, 60-70 per cent of families referred to GOSH fall apart under the strain. Lindsay’s marriage was one of them. Her career (she was a barrister, specialising in fraud) is also on hold, and her own health has suffered from the stress of caring for her daughter. Her nursing skills, by contrast, have developed remarkably. At one point she was administering medication 17 times a day, and now knows more about haemangioma management than many a nurse or doctor in a general hospital. It’s not a specialism she ever expected. Or wanted.

Oral steroids for ten months (meaning virtual social seclusion for Cosima because of the risk to her immune system), daily cleaning with potassium permanganate during the wound’s most ulcerated times, and three lasering operations to accelerate the healing process and bring some short term pain relief, have brought her ‘strawberry mark’ under control; it’s now stable, and beginning to reduce internally.

The future is still challenging, but, for Cosima at least, the present is fun. For the first time, she can wear a coat with a zip, instead of the ponchos which have been the only suitable gear to date. She can meet and play with other children, has started to go to a music class and is developing some confidence in group situations. And after a lifetime of being rocked to sleep by her mother or grandmother (to prevent the possibility of damage to the surface of the haemangioma if she were allowed to be awake in her cot), she’s learning to fall asleep on her own.

She can, in other words, now begin to lead a slightly more normal life. If the public will let her.

Useful sites:
www.birthmarksupportgroup.org.uk
www.changingfaces.org.uk
www.cosimafundraising.com (where you will find a link to enable donations towards Lindsay’s campaign to buy and maintain a more sophisticated laser treatment machine for GOSH).

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