Shay Collins with son who has hypohidrotic ectodermal dysplasia (HED)

By Shay Collins

Our story of parenting our son, Ruben, during his first year is one of instinct and intuition, as we didn’t know until he was 16-months-old that Ruben’s collection of features amounted to something called hypohidrotic ectodermal dysplasia (HED). There’s no known ectodermal dysplasia in our families. We’d been asking all the right questions about our fluffy-haired, dry-skinned, hot-bodied babe, but it wasn’t until I mentioned our son’s toothlessness to his older brother’s dentist, that an answer was offered.

Our sweet boy sleeps!

Dr. Claire remembered this rare condition from her university lessons decades before, and while she’d never seen HED in her career, she was spot on! The National Foundation for Ectodermal Dysplasias’ website was where we were able to put it all together. One of the darling boys on the HED page could have been Ruben’s twin (and later his daycare would accidentally use that little boy’s photo from a resource I put together, instead of Ruben on his own medical form!).

If your little one is affected by hypohidrotic ectodermal dysplasia, check out our new publication for extensive information and tips: A Guide To The First Year Of Life: Hypohidrotic Ectodermal Dysplasia.

Ruben Arrives

Ruben had the classic white, fluffy hair often found in HED.

Ruben was born bottom first into the world, doing things his own unique way from the beginning! We were surprised by his lovely covering of fuzzy blonde hair (our older son had been quite the baldy at birth) and noticed his eyelashes emerging during his first weeks. His fingernails were fused to his fingertips but they gradually lengthened and strengthened. 

We noticed Ruben had some difficulty breathing through his nose so we used a baby saline nasal spray regularly, with great effect. Wow, those boogers were epic! A sneeze could launch a sticky mass across the room. Shoulders frequently wore unintentional booger brooches. We started buying nasal spray weekly. 

Ruben seemed more dry overall as a baby and we used some natural moisturizers and baby oils which worked well. Later, when his skin seemed more eczema-effected we found a locally made natural eczema and psoriasis cream that really cleared things up. 

Ruben has suffered from dry skin and eczema.

Our Little Radiator

For an Autumn baby in sub-tropical Australia, the temperature was mild, though we noticed Ruben didn’t like to be swaddled, and needed lighter layers than the rest of us. Later that year, as the summer warmth emerged, we found ourselves carrying a water spray bottle everywhere, or using a wet flannel to cool his face and body. He radiated heat. This cooling approach was especially important in the car; in those hot car seats generally, and always if the car had been parked for any period in the sun. We also bought a USB-powered fan to direct cooled air to the back seat. 

We took a family trip to Bali when Ruben was 7-months-old and it was probably the closest he came to overheating. We still didn’t know he wasn’t sweating. After being in the baby carrier against my body, walking on a hot and humid day, he was very lethargic and needed wetting down in a cool cafe before he perked up again. 

Red ears can be a sign that your baby is warm.

Ruben was a pretty happy baby, and being too hot was one of the few things that would cause his behavior to change. Some of the signs were being suddenly tired or grumpy, seeming to droop or wilt in the heat in a quiet, sad kind of way. During the summer, splashing in a tub of cool water was his happy place!

Our happy boy!

Feeding Ruben

Breastfeeding was easy, as it had been with his brother, but at nine months Ruben got a head cold, breastfed all day then abruptly stopped. It was a nursing strike that ended our breastfeeding journey, and I do wonder if the discomfort of a sore throat combined with the warmth of being against my body in the late-spring heat was just too much for him. He took to bottles with gusto and preferred a goats-milk formula. 

Ruben enjoys many soft foods in his diet, like watermelon!

Introducing foods for our toothless toddler was much the same as it had been for our older son. We took a casual baby-led weaning approach. Ruben loved things like avocado, banana, cucumber sticks, mangoes and watermelon, soft scrambled eggs, hummus and beetroot dips and anything softly textured that he could make a wonderful mess with. Ruben’s first teeth (two top molars) didn’t emerge until he was two, but that hasn’t stopped him from having a full and varied diet. He only struggles with very crunchy things like hard crackers, or meats that really need chewing. He’ll still have a go, then spit out what he can’t swallow.

Much like his take on life in general really! 

Fast Forward

Ruben is now almost 4 and such a joy. His first two teeth emerged at around 2.5-years-old. With light-hearted curiosity, he’s started to notice his teeth are different from others’. We talk about how everybody’s unique and about visiting the dentist to get some more teeth when he’s ready.

Ruben does NOT like nasal sprays and we’re still looking for solutions to help with this. He has a growing awareness of staying cool, uses his water mister often and seeks out cool spaces (with occasional reminders needed when he’s suddenly cranky on a hot day). He loves a splash in the pool or at the beach. Jumping on the trampoline with his brother is lots of fun too, in short bursts! 

Shay Collins is a guest blogger for the NFED. She lives with her husband, Martin, and their children, Theo and Ruben,  in Queensland, Australia

Would you like to share your experience with ectodermal dysplasia? We would love to feature you on our Stories of Hope blog.

Share Your Story

6 comments on “Caring for Our HED Baby Down Under”

  1. 1
    Anna on January 11, 2023

    Hi Shay,
    What a beautiful story and a gorgeous little boy!
    We have ED in my family and my little Aussie boy has it too (9months).
    Just wondering where in Aus you are?
    Thanks for sharing your journey!

    1. 2
      Veronica Minard on January 17, 2023

      Hi, Anna! Shay lives in Queensland. If you would like, we would be happy to share your email address with her. Just let us know. We will only do that with your approval. Thanks! – Veronica

  2. 3
    William Casey on January 11, 2023

    My younger brother has it as well. He 9 years younger than me. He is 56 now. He is a lawyer and a father. We used to play ice hockey in an adult league. He used to soak his uniform before playing. After playing, my uniform became soaked with sweat, his was drenched before playing, and completely dry after. Any questions or advice, just email me

  3. 4
    Geoff(U.K.) on January 11, 2023

    A word of encouragement,my brother in law who is now in his seventies had all the classic HED conditions but at an early age displayed many athletic skills. He progressed from competing at Junior Wimbledon to representing his county at tennis and still plays to a good standard these days. He was a competent squash player who wasn’t keen on warm courts in matches though. In addition he was a low single figure golfer and hot days required a wet towel to cool down.

  4. 5
    Mark Lahey on January 11, 2023

    I use this for dry nose in Brisbane and a humidifier.

  5. 6
    Angie Cribbs on January 11, 2023

    Loved reading your story. All very familiar and very much the same as ours. My daughter who is now 15 was 16 months when we found out and it was also through her pediatric dentist.

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