lacey and holly- patient
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Lacey and Holly’s Mum Will “Never Forget” the RCH

This is the story of both my daughters Lacey & Holly Hamlyn.

Lacey our first was born on the 20th of January 2020, we were delighted but soon found something wasn’t quite right.

Lacey was flown to the RCH at 24 hours old & we followed by a car as there was no room in the helicopter, we are regional so it took us 2.5 hours to drive down.

When we arrived I remember thinking “Oh my this place is huge” as we made our way to the Butterfly Ward, little did I know this would soon be my second home not once but twice in two years.

Lacey was born with a rare genetic condition called Pierre Robin Sequence or PRS.
PRS meant she had a small jaw that pushed her tongue backward blocking her airway & a cleft palate (missing the roof of her mouth.)
All of this had been totally missed while I was pregnant.

Lacey’s first surgery was at 6 weeks old she had her jaw broken on both sides & grown out over 9 days by slowly moving it forward, this opened up her airway.
For about 7 of those 9 days she laid motionless on a ventilator & time seemed to pass by in slow motion as we spent every second we could by her side.
It was all worth it seeing her breathe on her own after 9 days.

All up our stay on Butterfly was just over 50 days long.

Lacey’s second surgery was to remove the plates holding her jaw together at 5 mths old & then our third & final surgery in August 2021 at 18 months was to repair the roof of her mouth & put grommets in her ears.

Surprisingly enough your palate controls the fluid level in your ears so Lacey had to wear a hearing device until she was 18mths old to be able to hear & the grommets fixed this problem, feeding was another huge problem we faced due to her not being able to suck on a bottle & solids would quiet often come out her nose.

Now 2021 I find out I’m pregnant again & due in September about 5 weeks after Lacey’s final surgery.
At my 12 week scan there she was a beautiful baby BUT her jaw looked suspiciously pushed back & my 20-week scan confirmed again we would be calling the RCH Butterfly Ward home again. Although we were excited my husband & I knew the uphill battle that lay in front of us, a battle we thought we had just put behind us.

9th of September 2021 just a few weeks after Lacey’s last big surgery we welcomed Holly & back to Butterfly we went.

Holly needed the same surgery as Lacey did & being the second time around didn’t make it any easier, the risks are the same & a toddler now in the mix added a new degree of difficulty as parents.

I was delighted to see all our beautiful old nurses & doctors on the ward, of course, they were stunned to see us but it really felt like coming home & their support was second to none.
It also gave me the chance to show them all photos of Lacey because of covid we hadn’t taken her back to the ward to visit.

Holly followed the same path as Lacey having her surgery at 6 weeks of age although with a little more excitement having an earthquake this time happen while on the ward.
Again we spent another 50 plus days on Butterfly before being allowed home.

Holly has now had her second surgery to remove the plates in January 2022 & we are waiting till 18 months for her final surgery to fix the roof of her mouth & grommets for her hearing.

This hospital I owe so much to & will never be able to put into words my appreciation.

Both my girls are a credit to the hard-working nurses & doctors. I will never forget each & every one of them & my girls will grow up knowing the names of those who worked so hard to give them a normal life.

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