Turning points: Jan07 - Madeleine Witham

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Madeleine Witham, 40, says her world changed the day she gave birth to her daughter, Ella. Ella was born with Cornelia de Lange Syndrome, which causes developmental, behavioural and physical problems.

“Without a doubt, Ella’s birth was a huge turning point. When she was born it wasn’t ‘me’ anymore; it became ‘we’, and it will stay ‘we’ until she or I die. That total dependence – emotional and physical – is absolutely life changing.

“Ella was diagnosed with Cornelia de Lange Syndrome at nine months of age. When she was born, apart from the fact she came out a fully extended breech (bottom first with feet near her head), as soon as she opened her mouth the doctor said ‘we have a problem’. Ella was born with a cleft palate – the whole top of her mouth was just not there. And because of her position in utero, her head was pushed down on her chest and her chin had receded. So we knew something was wrong immediately.

“I was shocked. We have another daughter, Chelsea, who is two years older and she was fine. But once a child is diagnosed with something congenital, the doctors start to look for other things. We had to take Ella to specialists for tests, and found a host of things that weren’t right before we got the final diagnosis. As well as the cleft palate, she had reflux and a heart defect. It was one nightmare after another.

“Cornelia de Lange Syndrome [CdLS] is caused by a random mutation – it’s not hereditary. Experts still don’t know where the mutation is. There’s always some sort of intellectual disability with CdLS, from mild to profound – most often in the mild to moderate range. Ella is in the bottom of the mild range, and she speaks, which a lot of children with this don’t. We’re very lucky. Still, she’s had to have fourteen operations so far.

“Ella’s eleven now. She goes to a school for children with mild special needs, and it’s absolutely brilliant – it’s our lifesaver. There’s no typical day in Ella’s life. I don’t know what each day is going to bring and that’s part of the difficulty. She can wake up crying, and that really sets the tone for the day. It’s like having a two year old – a grumpy two year old – a lot of the time. Other days, she’ll be obliging – the days when it’s easy, my husband, Mark, and I think ‘why today?’ There’s no rhyme or reason.

“It has profoundly changed our family’s life. Ella’s birth changed everything and every moment since as well. It’s every day, everywhere you go, do or don’t do. It’s more difficult than easy, and there are more bad days than good, but our love for her outweighs the difficulties by far.

“Dealing with the sadness of it can be very draining. For me, acceptance has been difficult. When Ella was born, Mark said, ‘Well, she’s our daughter and we love her, and we’ll just do what we have to’. It’s been, I hesitate to say, an easier road for him. At certain moments in the day, when someone stares at Ella or I observe another child doing something, it hits me in the gut. I still struggle with that.

“Thankfully, although it has been very, very difficult, my husband and I have stuck together. The divorce rate for parents of children with disabilities is 80 per cent and I totally understand why, because the pressure on the marriage is enormous.

“I’m a music teacher, and at the moment I put music into braille for Vision Australia. I do a little bit of flute teaching, and some study as well. When I had Ella I sort of fell off the perch in terms of career, so I’m just trying to get my skills back up.

“My life revolves completely around Ella – I don’t know how else to do it. I’m totally consumed by her needs and demands – emotional and physical. I do think, ‘how can I keep doing this?’. I’ve just turned forty – how can I do this for another twenty years? But I have to. Put her into foster care? I can’t do that to her.

“I wrote a book about Ella, Love Ella [Wild and Wooley, 2006, visit www.love-ella.com, partly out of despair. People have no idea about families like ours – and I want to try and lift awareness about issues like the lack of respite care. I’ve had wonderful feedback.

“And I want people to love Ella! Often, adults and other children can’t see past her disability and see there’s a child in there – a child who, despite how difficult it is, has a fantastic sense of humour, is a wonderful, loyal friend and has an awful lot to offer. I want people to see that.

“I think our society’s values are just so shocking. We value money and beauty, we want perfection. You can’t compete when you have a child who is not perfect, who doesn’t look like everybody else, who doesn’t behave like everyone else.

“I love Ella absolutely. Mark, Chelsea and I would do anything a million times over for her. We just want the best for her. I want people to love Ella because she knows when they don’t, and it hurts her.

“I wish I could say there is a lot of light and joy in my life, but I’m not there yet. I’m working on it, and there are moments of joy. I also think the fact I’ve just turned forty is a bit scary for me – it feels like another turning point in my life.”

About Cornelia de Lange Syndrome

Cornelia de Lange Syndrome (CdLS) is a genetic disorder present at birth. Experts aren’t sure of the exact number but they think that it occurs somewhere between one in 10,000 to one in 30,000 live births worldwide.

A syndrome of multiple congenital anomalies, CdLS is characterised by distinctive facial appearance, feeding difficulties, behavioural problems, developmental delay, varying levels of intellectual disability, small head size and upper limb deformities.

The facial characteristics usually seen in CdLS children are thin, joined eyebrows, long curly eyelashes, a short upturned nose and thin downturned lips. Children born with this syndrome often have heart defects, cleft palate, bowel abnormalities and gastroesophageal reflux. Children with CdLS are usually expected to have a normal life expectancy. Australia has a small CdLS support group.

For more information, visit www.cdlsaus.org.

Words: Josephine Brouard and Karen Spresser.  Photography: Andrew Lehmann & Scott Hawkins. Styling: Nicholas Sholl. Hair & make-up: Yolanda Lukowski & Jay Jay Rauwenhoff.