Who is judging me?

Hypohidrotic Ectodermal Dysplasia babies are slightly different from the first breath they draw. To this day I now believe the greatest squeals of protest in the midwife’s arms were not due to the poking and prodding, but the fact they were swaddled.

My little man, my number one boy, was born exactly one week before his due date. We know, it was because we had told all the family and friends that we would call him by the name of the Melbourne Cup race winner. He was due on THE day, yet he came exactly a week early. Don’t blame him, Etherial isn’t really a boy name.

We said hello to a wrinkly, dry skinned little baby and the doctors immediately started to question my due date accuracy. He looked over-cooked, not early. Well, we knew without a doubt when he was due as we had the precise day of conception.

How is this possible? We had our number one son with the help of IVF (in vitro fertilisation). We knew the exact day he was transferred to me and we also knew he was ready to attach within a day or two.

I had the date wrong, they thought, so I just shut my mouth. I wanted to enjoy him, my first child.

When he was admitted back to the special care nursery because he contracted staff in his broken skin, he was miserable most of the time. He was wrapped up in a singlet, jumpsuit and a hospital blanket so he wouldn’t get cold. He even had a cap on whenever I went in. I had no idea he was unable to sweat at that time so his crying and un-settled ways were not explained.

I was looked at as a mother who was “doing things wrong” because I always questioned why his temperature was so high. “37.5 degrees centigrade is the temperature to start getting worried at,” I kept getting told “Nothing to worry about”

I used to take the cap off, I somehow didn’t like seeing him with it on.

The real judging started when we went out. Remember, he was not diagnosed with HED until he was 18 months old, so we were flying by the seat of our pants most days.

Here we would be, walking around with a baby half undressed and lying limp in our arms whenever it got too warm out. My husband was holding him at a local shop once when little man was asleep. He had him in the classic football hold, head in his hand and the legs and arms either side of the forearm. To all the world he looked like a doll because his limbs were straight down from his body, he was totally limp, unlike any baby I had ever seen. The incredible thing about it, little man was on his back, not his stomach. Yes, people stared. I thought it was because it looked so adorable. They stared because babies as a general rule don’t look like dolls.

The hardest thing was having him in a pram. That is why I insisted on having one which faces me when I push him, didn’t want my baby staring at a big blurry empty instead of the comfort of mummy. Somehow by instinct, I knew that my body was too warm for him to cope with. So the baby sling was only used sparingly, the pram was the method of  prefered transport.

Pretty soon I noticed small things being commented on that I took as “normal”. His hair, too fine and unkempt. The “bet she doesn’t wash him.” which I wasn’t meant to have overheard, still hurts today. The snotty nose immediately seen as “contagious”, same with the crusty eyes. He has conjunctivitis, would be the reaction from “specialists”, more like a small core of  mothers who didn’t want to mix.

Black around the eye orbs, well obviously we bash the poor child, couldn’t be an allergy or the actual condition of HED. No, he hadn’t been diagnosed yet.

Then came the day when my Husband finally “broke through” the perceptions. He approached our GP and asked if our boy can sweat. He had seen a story on A Current Affair late in 2001 and was shocked at the similarities the two boys exhibited to our little man. We suddenly stopped being judged on the simple stuff, now it was “serious”. We had a child who didn’t fit in a pigeon hole….

But you know, after all that, who was the harshest judge on how we were raising our boy?


I had to learn to take things as they came and stop trying to be the preconceived mother I had in my head. We are none of us perfect in every way, we are human beings who are doing the best we can with the knowledge we were given and we have sought.

With Love & support,

Tarja Kelly



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