It was in the early hours of 25 November 2001 when the midwife handed me Danielle, wrapped snugly in a blanket, only her face showing. The midwife said the baby was having difficulties breathing and quickly took her away to the nursery.
My husband looked stunned but I assumed it was the hour of day and the swiftness of the birth. The nursing staff were quiet too, I realised in retrospect.
My parents came in with my two little boys and the nurse took them to the nursery to see our baby, then all went home so I could rest.
The obstetrician came to see me and said everything was fine, but the baby had a few birthmarks. I was unfazed because the boys had both had some ‘stork bites’.
Later, my midwife wheeled me to the nursery to see my new daughter. I was unprepared for what I saw. My baby girl was covered in huge black birthmarks. Almost her entire scalp, her neck, one elbow, her back, bottom and legs all had black marks on them.
Hands trembling, I reached into the crib and stroked her tiny face. She awoke and our eyes met and while a horrendous fear gripped my heart, I was overwhelmed with love for my third child. As I fed her for the first time my mind was in a whirl. She was so beautiful. I knew I’d love and protect my daughter forever.
The next few days were filled with a blur of doctors and brave faces as we sought answers. I was consumed with guilt. It must have been my fault. Privately, I cried. I was afraid I would lose my precious daughter.
I learned that Danielle had Giant Congenital Melanocytic Nevus. The giant form occurs about once in about 500,000 people. It occurs when the melanocytes overgrow and most are benign. However, with the larger type, the risk of melanoma is higher than in non-nevus skin. Nevus skin does not have sweat glands either, so one covering a large area of the body has other issues.
My family was very concerned but wonderfully supportive. We were able to take our darling baby home when she was five days old, only to return her to hospital when she was nine days old for drastic major surgery. The large nevus on her upper and lower back and half of her scalp was removed. She was on a ventilator for five days, then in a special single room for a month. I stayed with her. I couldn’t bear to leave her.
My husband and parents endeavored to keep things as normal as possible at home and school for my boys.
We were allowed to take her home on Christmas Eve, just for Christmas Day, then back to hospital. She was then discharged under strict conditions.
During Danielle’s first year we made daily treks as outpatients to the Adelaide Women’s and Children’s Hospital for dressing changes on her head and medication to try to kill off the persistent infection stopping the growth of new skin. The scalp didn’t heal and two days after her first birthday she had a skin graft, taken from her thigh. The long term affect of the skin graft is that she is bald on half her head. Joy and aching fear were parallel partners in my life.
Every day brought more anxiety and we struggled to keep life in balance for our two sons, aged eight and five years. They adored their baby sister and knew almost as much about her nevus as we did.
One of the most difficult things to cope with was, and still is, the unkind stares and offensive comments cast by adults who should know better. People have said things like, ‘What are those marks on the kid’s legs?’ ‘Are they bruises?’ ‘Has she been burnt with a cigarette?’ ‘Yuck. Look at her head.’
During that stressful first year my husband and I started an on-line support group to reach other Australian families coping with this rare condition. We distribute a quarterly newsletter and keep in touch with pediatricians, dermatologists, and plastic surgeons to keep up-to-date with new information. We don’t want any other family to feel as isolated, useless and afraid, as we did, from lack of knowledge.
Starting kindergarten was a monumental hurdle. I desperately wanted to be with her to protect her from the world. The kindergarten staff were wonderful and Danielle thrived. She is a bubbly, beautiful little girl, full of energy and adored by those who know her.
She is nearing the end of her first year at school and is achieving all the benchmarks for her age and has many delightful friends. She goes to ballet and has had swimming lessons.
Beginning these activities was emotional for me because her nevus is also hairy and she now has hundreds of satellites, small nevi. When she was born there were no satellites on her sweet little face and arms, but now there are too many to count. In summer she has her legs, one elbow and neck shaved regularly. Danielle loves to wear a bikini and is comfortable in her skin, for now. She doesn’t try to hide it. Constant attention to sun care is essential so we prefer indoor activities. We continue to hear thoughtless comments but we are tougher now and have a few phrases ready to respond. We have produced a leaflet and hand one to anyone we think needs information.
Danielle has endured several surgical procedures and has regular checks with her medical team. She will be carefully monitored for melanoma all her life. I know the hairless side of her head, the outbreaks of foliculitis on her neck and the hairy patches on her legs and other places might cause teasing as she grows up, but I hope to give her the strength to cope.
Danielle is gorgeous and when I look back to the fear and dread we had and how I wished for a magic wand to take away all her problems, I smile to myself.
She is perfect and there is nothing about her I would want to change.
“A gender-equal society would be one where the word ‘gender’ does not exist: where everyone can be themselves.”*
I’ve always been aware of gender conditioning and actively tried to combat any lingering prejudices or stereotypes in my own parenting, even down to encouraging dolls with my boys when they were little. It’s great to read people writing about gender issues they’re experiencing with their kids. For too long these subjects have been discouraged or silenced. I’d love to publish some more creative writing on this topic, especially if you are struggling with a child who actively tries to move away from gender normative preferences. A society where everyone can be themselves – thanks Gloria for those aspirational words.
* Gloria Steinem