Is my baby okay?

Today’s parents expect a trouble-free pregnancy and delivery, yet that doesn’t always happen.  A moving account by Bruce Atherton of his first-born’s story.

Let me say from the outset that my wife, Kate, and I realise there is no such thing as the perfect child or the perfect life. Even the healthiest babies are born into an uncertain world of twists and turns and ups and downs. This is our story.

More than 62,000 babies were born in Victoria in 2002.  As far as we know, only one of them, a baby girl, had a condition known as CMTC – Cutis Marmorata Telangiectasia Congenita. She is our daughter Darcey.

Darcey was born with purple birthmarks over much of her body. Her right leg was bigger than her left, and some of her fingers and toes were bent. One of her fingers was extraordinarily long and the lines on both her palms were unusually deep.

At the time, the doctors struggled to identify her condition because her symptoms suggested several possibilities. Among them were two conditions known as Sturge Weber Syndrome and Proteus Syndrome.

Sturge Weber Syndrome is a neurological disorder affecting brain development. It is characterised by port wine stains, epileptic fits and cerebral atrophy.

Proteus Syndrome, on the other hand, attacks the body. It is believed to be the condition that Joseph Merrick (better known as the Elephant Man) suffered from. Proteus also displays unusual birthmarks but its most distinguishing symptom is extreme disfigurement as the condition progresses.

For 18 months after Darcey was born, the doctors were at a loss to make a firm diagnosis. Eventually after several tests, Sturge Weber Syndrome was thankfully ruled out. But Proteus Syndrome was an ever-present spectre and for a long time, Kate and I lived beneath a black cloud.

As the months passed though, the possibility of Proteus diminished and Darcey developed into a healthy and engaging toddler with CMTC – a comparatively mild and benign syndrome that laser and orthopaedic surgery may yet help to address.

I say a comparatively mild syndrome because the alternatives were devastating. But I don’t wish to make light of Darcey’s condition for a second. Because I know she will have some tough times, both socially and physically, due to CMTC. And though Kate and I will be there for her in every way that we can, it’s Darcey who has to live with her condition, and people’s reaction to it, every day.

There are other realisations too. For instance, doctors are fallible and they do make mistakes. Even specialists make mistakes. And though the specialists we have dealt with have been totally dedicated and excellent physicians, we have discovered that their opinions are only that – opinions. And like many opinions, they can vary from person to person. And some of them can be wrong.

Sure, specialists are busy people who see many patients each day. We tried to make the most of our appointments by questioning as much as we could, hoping to focus the attention of the specialists on our daughter.

During one appointment we were taken aback to hear the specialist refer to Darcey as a boy. Normally, this wouldn’t surprise us because Darcey can be a boy’s name too and when babies are young and clothed, it can be hard to pick their gender. But on this occasion we were a little bewildered because Darcey was lying on her back, naked, on the table in front of the specialist!

Having said that, we count our blessings that we live in a part of the world that has created the Mercy Hospital for Women and the Royal Children’s Hospital in Melbourne.

Not long after Darcey was born we were directed to the Children’s Hospital where our daughter was seen by a panel of specialists. When I say panel, I mean at least 20 doctors. I remember feeling thankful that we lived in a society where so many specialists could gather to look at one small child.

Yes, there is red tape and yes, there is bureaucracy, but the Royal Children’s Hospital is a complex organisation of learning, caring and healing and I’m buoyed by the knowledge that it exists.

Finally, there’s the realisation that there are many good people in the world who do wish to help others through difficult times. And though it’s probably a little sad that I had to find that out the hard way, it’s a comforting realisation nonetheless. Our thanks to all who have been there for us.

By Bruce Atherton

Roberta Honigman has been a social worker and counsellor for more than 20 years. Most of her work has been with families who have children born with significant disabilities.

She says that in her experience, in the overwhelming majority of cases where a child is born with a disability, families find themselves in a situation they could never have anticipated.

‘The idea of a having a child born with a disability may pass as an unpleasant ‘what if?’ but it is really something most people just want to push out of their minds,’ Roberta says.

‘With all the modern interventions - ultrasounds, scans and tests – most parents are reassured if everything is okay. But there are many things that the tests don’t pick up such as birthmarks, blindness, deafness, or intellectual disability and autism.

‘If a baby is born without any prior indication of disability, it can be devastating,’ she says. ‘Unfortunately, there are few guarantees in this world. So when people are confronted with something they are not expecting, there is shock, numbness and disbelief.’

‘Often, the mother is still in a daze and exhausted from childbirth. Sometimes, the professionals themselves don’t know what’s wrong with the child. Or there are conflicting opinions. Hopes can be raised and dashed in the same breath. So it can be an incredible rollercoaster for parents.’

Sometimes problems can arise if parents are part of a peer group who are all having babies at the same time. ‘A parent who has a child with a disability can experience a sense of inadequacy, guilt or shame,’ she says.

And then there are the grandparents who obviously like to be involved because they’re expecting to be Nanna and Papa. ‘Often, they’re trying to normalise a situation that’s not normal while they are also trying to understand and come to terms with the situation themselves. It takes a very special person to be able to sit with someone’s grief and sadness for a long time.’

Roberta says the tendency between partners to lay blame is also common. ‘The parents, particularly the mother, may start to think, ‘What did I do through the pregnancy. What did I drink? What did I eat? What did I do wrong?’

‘At the same time, there can be grieving for the loss of potential, or what you think your child and your life could have been, Roberta says. ‘There is also grieving for the loss of the life you wanted to have.

A mother with two children with severe disabilities once said to me: ‘I know I will never be able to see my children graduate or to ask them how their day was at school. I know I will never be able to walk them down the aisle. And I have to live with that.’

‘We like to share the joys of our lives and our children,’ Roberta says, ‘and to know that we can’t is devastating.’

Even simple tasks that were once taken for granted – such as going for a haircut or shopping – can become logistical challenges involving several people and specialist carers if the child is severely disabled.

‘In a very practical way, your life isn’t your own,’ Roberta says. ‘Basic rights such as privacy can be stripped away by the constant stream of carers moving through your home.’

Her initial advice to parents with a new-born child with a disability or illness is to avoid the internet, where there can be a lot of misinformation about the condition from non-professional sources. Parents should be referred to the appropriate specialists who will provide specific advice relating to their child. 

In her experience, it is also important if there are other siblings in the family to try and normalise the situation as much as possible and to help the other children accept and love the new baby.

‘Kids will accept and do accept,’ she says. ‘They can be much better at it than adults.’

*Roberta is currently working in the laser and dermatology unit of the Royal Children’s Hospital in Melbourne and sees children and adults born with birthmarks and other facial deformities.

Early childhood intervention is the process of providing specialised support and services for infants and young children with developmental delays or disabilities, and their families. 

Parents of children diagnosed with a disability are usually referred to a range of specialist and pediatric medical facilities. After that, finding the right support structure is important for the ongoing needs of both child and family.

There are many associations for specific conditions such as Down Syndrome, autism or diabetes. For parents struggling with where to go and who to ask for help, associations dealing with disability in general are a good starting point.

Association for Children with a Disability (ACD)

The ACD provides a source of information, support and advocacy for families of children with a disability, including:

• Free telephone information and advice on any issue concerning children with a disability
• Free publications, including 'Through the Maze: A Guide to Benefits and Services for Families of Children with a Disability'.
• NoticeBoard, a bi-monthly magazine featuring parent stories and the latest news on new services and programs
• Forums and workshops, including an annual 'Info Expo'

Parent Support Workers provide information and advice at any time to parents of a child with a disability or concerned family members or friends.

Phone: 03 9818 2000, freecall 1800 654 013 or email mail@acd.org.au

Useful Websites for Parent Information

• Child And Youth Health (South Australia) - Web-site for parent leaflets
• The Children's Hospital at Westmead (New South Wales) 
• Department of Human Services (Victoria) 
• Better Health Victoria   
• Royal Children's Hospital - Web-site for directory of Victorian Support Groups

This article was first published in Australian Family Magazine, June 2004.