True Story: "I hate that people stared as if my baby was an alien."

As told to Lucy Dimbylow 

“‘What’s wrong?’ I asked from my hospital bed. I’d just given birth to my second child, Lily, and the nurses hadn’t brought her over yet. ‘Nothing, she’s fine,’ one of the nurses said. ‘Just a bit swollen.’ But when I saw Lily, I was shocked. The left side of her face was so swollen, I couldn’t even see her eye.
The paediatrician said it was probably just fluid and should go down by morning. But when it didn’t, he took Lily away to examine her. Soon, I was called to the neonatal ward. Tears rolled down my face as the doctor explained that the mass on Lily’s face appeared to be a tumour ? they didn’t know whether it was cancerous or not. She was blind in her left eye, and might be brain damaged. I thought I was going to lose my baby. 

When I phoned my husband, Hamid, who was at home with our son Kian, he rushed to the hospital. He was devastated but I went into autopilot mode. I knew, whatever was wrong with Lily, we would deal with it. 

Two days later, Lily had an MRI scan. When the radiographer told me the lump wasn’t cancerous, I burst into tears of relief. The consultant said the mass on Lily’s face was a rare type of birthmark called a lymphangio-haemangioma. She was blind in one eye, but there was no brain damage or cancer. I was overwhelmed with relief, but also distraught that her condition was permanent. 

After five days in hospital, we were discharged, and over the next few weeks, I did a lot of grieving. People had always commented on Kian’s good looks and I never expected Lily to be any different. I hated it when people peered into her stroller, then turned away as if she didn’t exist. Apart from the swelling, Lily’s first year was completely normal. She walked and talked early and her condition didn’t seem to affect her development at all. 

Then one morning, when Lily was 16 months old, her eye looked more swollen than normal. By evening, the skin was so taut that it was almost transparent and splitting. We rushed to the A&E, where Lily was diagnosed with cellulitis - an infection in the deep layers of tissue in her birthmark. Untreated, it could spread to her brain and cause permanent damage. She was given intravenous antibiotics. 

For the next 18 months, Lily suffered at least one infection a month. Each time, she was hospitalised and given intravenous antibiotics to prevent the infection from spreading. Watching the doctors fit Lily with a line time and time again was the worst thing. ‘No more, Mummy!’ she’d cry. I couldn’t hold back the tears, and often, neither could the nurses holding her. It broke my heart. 

The frequent hospital stays made it hard to live a normal life. Hamid stayed at home with Kian while I stayed at the hospital with Lily. I only saw them once or twice a week. After 18 months of near-constant cellulitis, Lily underwent five courses of sclerotherapy. Chemicals were injected into her birthmark under general anesthetic in an attempt to shrink it and reduce the frequency of her infections. Each time, we were in hospital for a week. 

It’s now six months since Lily’s last treatment, and she’s remained infection-free. She’s due to have an MRI scan soon to see if her birthmark has shrunk. If it has, she’ll have more sclerotherapy. If not, she faces major facial plastic surgery. Hamid and I love Lily as she is and hate to put her through major surgery just to improve her appearance, but we know society will never fully accept her otherwise. 

I have moments when I wonder why this had to happen to Lily, but things could have been much worse. Lily is strong, self-assured and just takes everything in her stride. She’s a remarkable girl.” 

Helen Fadai, 41, who lives in Epsom, Surrey, in the UK, is married to Hamid, 40, a company director. She’s a full-time mum to Lily, 3, and Kian, 5.

Haemangioma : the facts • A haemangioma is a birthmark, caused by benign overgrowth of blood vessels. • Haemangiomas can look unsightly. Some become large, may bleed, or get infected or are cancerous. • In rare cases, haemangiomas may interfere with vision, breathing or feeding. • Laser treatment can be used to stop bleeding. Oral steroids are used to treat serious haemangiomas or those that are dangerous because of their size or location.  • If you think your child suffers from a haemangioma, consult your GP first. Based on the size and type of the mark, he’ll be able to decide whether you need to be referred to a dermatologist, surgeon or oncologist.

If you have any comments or practical suggestions, write to us at editor@family.sg 

- Mother & Baby
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