“I was anxiously waiting to meet my daughter after what felt like a lifetime in labour. When they placed little Eloise on my chest, I couldn’t help but marvel at how perfect she looked. But what was that pinkish stain on the right side of her face covering part of her eye, cheek and top lip and travelling all the way up to her temple?
“Before I could ask, the nurses whisked her away for tests and by the time I saw her again, the mark had become darker and more visible. ‘Will it go away?’ I questioned my gynaecologist when he visited later that day. ‘No,’ he replied regretfully. ‘Eloise was born with a condition called Port-Wine Stain (PWS) and it’s permanent.’
“My husband Kok Siang and I were crushed. After struggling to start a family for more than four years and surviving a devastating miscarriage, we had been ecstatic to find that I was expecting. We were also over the moon when we found out it was a girl. I had a smooth pregnancy and although giving birth was more overwhelming than expected, nothing had prepared me for this hurdle. I had never even heard of PWS before, nor seen a child with this condition.
“Kok Siang and I needed some time to digest the news and educate ourselves on the condition. We were distraught and weren’t ready to face the world. So, for the two nights we were in the hospital, we refused to entertain any visitors. Instead, we spent this time reading up about PWS online and asking the doctors as many questions as we could think of.
“When we brought Eloise home, we still hadn’t come to terms with her condition, but knew we had to stay strong, so as to do the best for our baby. Aesthetic aspects of the condition aside, we were concerned about the health implications on her. A PWS near the eye could lead to glaucoma (the increased pressure inside the eye affects vision and may cause blindness if it’s not treated). And if it’s near the brain area, there’s a rare chance it could cause neurological disorders such as seizures, which are most common in the first three months.
“We had to carefully monitor Eloise to make sure she didn’t suffer from any of these complications and also take her for an eye check-up every six months. When Eloise was almost 6 months old, we started pulsed-dye laser treatment to help lighten the mark. Although the treatment, which is slightly uncomfortable, only lasts 10 minutes, we needed to literally pin her down as she wouldn’t stop screaming and wiggling the entire time.
“The first time was the worst. It broke my heart to see my sweetie suffer — her eyes were covered, so she was confused over what was going on. According to the doctors, this treatment can be carried out on Eloise up to 20 times, so as to lighten the mark by about 70 per cent. These don’t come cheap though, since each session costs $600, but luckily, it’s fully covered by Medisave.
Click on for how the family is coping...
“Eloise recently went for her 14th laser treatment session ― while we’ve seen a slight improvement, strangers still stare at her when we’re in public and random people question us.
“As parents, we are learning to manage the questions and stares much better now. We often tell our daughter, ‘Daddy and Mommy love you ― you are beautiful’ and ‘It’s okay, Eloise, there are more important things in life’. As she grows older, Eloise has also learned to respond as we do. Recently, when a kid asked her about her condition, she actually pointed to her face and nonchalantly replied ‘birthmark’.
“When my daughter grows up, I want her to know that although she may not fit into the traditional perception of beauty as portrayed by mainstream media, her inner beauty will be projected for all to see. I’m now also more empathetic to people with special needs. From my experience, I have learnt that nobody is perfect and we all have challenges in one form or another to overcome.
“Eloise, who turns 3 soon, started full-day childcare when she was 20 months old. She is developing well socially and in all other aspects. Her teachers tell us that she is very independent and gets along very well with her friends in school.
“As parents, we want to do our best to help our daughter to cope. It’s a cliché but we know there’s a purpose for everything and we want to raise Eloise to be a confident woman with a healthy self-esteem who lives her best life.”
Phoebe Sung lives in Toa Payoh with her husband Tan Kok Siang and their daughter Eloise, 2.
This story was first published in the May 2014 issue of Mother & Baby Singapore.
Main photo: INGimages
What is a port-wine stain? Is it just a surface skin thing? Click for the facts...
Port-wine stain — the facts
SmartParents expert and consultant paediatrician at Anson International Paediatric & Child Development Clinic Dr Low Kah Tzay shares insights on this rare condition.
• A port-wine stain is a permanent reddish birthmark caused by the abnormal growth of capillary blood vessels.
• While the causes are not clear, some are due to genetic changes.
• In the United States, up to five in every 1,000 newborns are born with this condition.
• If the stain only occurs on the skin surface, then this condition is usually only cosmetic. However, some cases are associated with Sturge-Weber syndrome, which has other complications such as developmental delays, seizures and eye problems.
• Your child may grow up feeling self-conscious, so explain to her that this condition is not contagious. Also, make sure she has a good support group of friends who understand the condition and accept her as she is.
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