Life ad­vice

It’s been a year since Rachael and Jonny Casella lost their seven-month-old daugh­ter Macken­zie. The grief is still raw, but Macken­zie’s Mis­sion has given them new hope

The Sunday Telegraph (Sydney) - Stellar - - Contents -

Rachael Casella on the pain of los­ing her baby to a ge­netic dis­or­der.

Peo­ple shy away from speak­ing about Macken­zie be­cause they are scared it’s go­ing to bring up emo­tions for us. But by bring­ing up Macken­zie, we’re never go­ing to be re­minded about her be­cause we don’t, for one sin­gle sec­ond, for­get about her.

Be­fore Macken­zie was con­ceived, we had a mis­car­riage. It was very hard, but we tried again, and had Ken­zie. She was the most per­fect, beau­ti­ful lit­tle baby.

Jonny and I had eight weeks off work to­gether with our baby. Those eight weeks were the hap­pi­est of my life. Then at 10 weeks, ev­ery­thing changed.

We took Ken­zie to see a pae­di­a­tri­cian be­cause one of the lac­ta­tion con­sul­tants at the lo­cal hos­pi­tal had said she wasn’t mov­ing the right way, and the lo­cal doc­tor seemed to think some­thing was wrong, too. We hoped they were wrong.

Within two min­utes of look­ing at her the pae­di­a­tri­cian said, “I’m 95 per cent sure she has spinal mus­cu­lar at­ro­phy [SMA].” We didn’t know what SMA was, so we said, “What’s the plan? Is it physio?” And he shook his head and said, “No. It’s a ter­mi­nal ill­ness.”

I don’t think any­one can ever de­scribe ad­e­quately in words what it’s like to be told your 10-week-old baby has a ter­mi­nal ill­ness. Jonny and I couldn’t speak.

The next day we saw a spe­cial­ist and she con­firmed the pae­di­a­tri­cian was right. We were told it was a re­ces­sive ge­netic dis­or­der, which means that Jonny and I were car­ri­ers. There was a lot of heartache. We’d given this to her. They started talk­ing to us about the risk to fu­ture ba­bies and I’m just sit­ting there go­ing, “Are you try­ing to tell me that my baby is go­ing to die and we won’t be able to have more kids?”

One in 20 chil­dren are born with a ge­netic de­fect. Dozens of ge­netic tests are avail­able in Aus­tralia, so we won­dered why we weren’t told about it. GPS are known to only re­fer peo­ple for ge­netic car­rier test­ing if they have a par­tic­u­lar cul­tural back­ground or fam­ily his­tory of it. But four out of five chil­dren born with a ge­netic dis­or­der have no fam­ily his­tory.

When she was seven months old, Ken­zie got very sick. We were in ICU and she went up and down. Then we got pulled into a lit­tle room and told she was prob­a­bly not go­ing to come home. We all laid in bed to­gether and had some time. And then she was gone.

I don’t know how we walked out of that room. I don’t know how when you ex­pe­ri­ence that pain you don’t die as well. You don’t un­der­stand how peo­ple are still sun­bak­ing on the beach or get­ting cof­fees or fight­ing about petty things. Can’t the rest of the world feel some­thing sig­nif­i­cant has hap­pened?

I’d writ­ten a let­ter about Macken­zie and the im­por­tance of ge­netic test­ing to mem­bers of Par­lia­ment. We were in­vited to at­tend the Bud­get in May of this year, and were told there would be a $500 mil­lion ge­nomics project and the first pilot pro­gram would be Macken­zie’s Mis­sion, which will research ge­netic car­rier test­ing.

We’re not the first peo­ple to have lost a baby to a ge­netic dis­or­der. Macken­zie’s Mis­sion rep­re­sents some­thing for all of the kids who should still be here. For more about Macken­zie’s life and mis­sion, visit mylife­

“We all laid in bed to­gether. And then she was gone”

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