Smiles re­set fu­ture

The Sunday Times - - NEWS - REGINA TITELIUS Health Re­porter

TWO-YEAR-OLD Hei­diMay Honess has a lot to smile about nowa­days af­ter painful surgery to break and re­set her jaw has brought her closer to hav­ing a “nor­mal” child­hood.

It’s a far cry from April when Heidi-May nearly died from her un­di­ag­nosed rare con­di­tion, mi­crog­nathia, which caused her chin to be con­sid­er­ably un­der­sized, block­ing her air­ways.

Par­ents Belinda and Shane, of Bal­divis, strug­gled for 15 months to get doc­tors to take se­ri­ously their con­cerns that some­thing was wrong with their baby girl.

It wasn’t un­til she had an emer­gency tra­cheostomy at Princess Mar­garet Hos­pi­tal to save her life that doc­tors fi­nally di­ag­nosed her.

Now re­searchers have re­vealed a way to di­ag­nose the con­di­tion in utero.

The new re­search, re­leased yes­ter­day by the Univer­sity of Syd­ney, is set to help pa­tients and their fam­i­lies strug­gling with the con­di­tion.

Re­searchers an­a­lysed ul­tra­sounds of more than 300 preg­nant women and then de­ter­mined a stan­dard mea­sure­ment for fa­cial fea­tures, in­clud­ing the an­gle of the chin.

The mea­sure­ments can now be used to de­ter­mine if there is any sign of un­der­sized chins in foe­tuses as young as 18 weeks.

Mr Honess said hav­ing an early di­ag­no­sis would save par­ents the stress and anx­i­ety of not hav­ing a di­ag­no­sis at birth which could end up be­ing life-threat­en­ing.

“Once we had the di­ag­no­sis af­ter all those months of not know­ing what was wrong, it was a real shock,” he said.

“So know­ing be­fore­hand would help you pre­pare for what’s in store, all the hos­pi­tal vis­its and surgery.”

Since hav­ing the ini­tial tra­cheostomy and a stom­ach peg be­cause she was un­able to eat prop­erly, Heidi-May un­der­went cor­rec­tive surgery in Au­gust ahead of her sec­ond birth­day.

The six-hour “nerve-rack­ing” surgery in­volved break­ing her jaw in three places and then re­set­ting it.

Sur­geons then in­stalled me­tal di­viders into her jaw as well as bolts that pro­truded from her skull, be­hind her ears.

For three weeks, Hei­diMay’s par­ents had to use a spe­cial screw­driver to turn the bolts 0.5mm twice a day to help set her jaw into place.

The bolts have now been re­moved and her par­ents can’t be­lieve the trans­for­ma­tion.

“We look at pho­tos of her from four months ago and she looks like a com­pletely dif­fer­ent girl,” Mr Honess said.

Al­though Heidi-May’s abil­ity to eat has im­proved, her jaw move­ment is still very re­stricted be­cause her fa­cial skin has been stretched taut.

“But de­spite every­thing she’s been through, noth­ing gets her down, she just keeps on smil­ing,” Mr Honess said.

Heidi-May will un­dergo surgery next month to al­ter the ten­dons and mus­cles in her cheeks.

Sur­geons will also take car­ti­lage from her ribs and insert it be­tween her skull and jaw bones which are fused.

Once she heals from those pro­ce­dures, Heidi-May can look for­ward to hav­ing her tra­cheostomy valve re­moved within 18 months.

Heidi-May faces nu­mer­ous surg­eries in com­ing years to re-break and set her jaw so her chin grows pro­por­tion­ately.

Apart from all the trauma of the surg­eries, the Honess fam­ily also faces years of fi­nan­cial strain as the Fed­eral Gov­ern­ment doesn’t re­gard mi­crog­nathia as a dis­abil­ity.

If you would like to help the Honess fam­ily, visit­di­may­has-a-rare-jaw-con­di­tion.

Pic­tures: Daniel Wilkins

Lit­tle things: Heidi-May Honess happy at home with her toys.

Brighter out­look: Heidi-May be­fore her op­er­a­tion and, right, with mum Belinda, Is­abelle, 1, and dad Shane.

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