- An ultrasound revealed baby Shiloh had rare amniotic band syndrome, with fibrous bands affecting his face
- Born nearly seven weeks early, Shiloh had a facial cleft and spent 13 days in neonatal intensive care
- After two reconstructive surgeries, the happy one-year-old is thriving, giving hope to other families facing the condition
Here Dayna Zachariah, 27, tells her story in her own words
Filled with happy pregnancy hormones, I gazed at the ultrasound screen. There was our beautiful boy, Shiloh.
‘Look at our little peanut,’ I said to my partner, TJ.
It was December 2024, and I was eight weeks along.
When TJ and I met through our shared love of art on Instagram, we knew we were soulmates.
TJ, now 32, was already dad to his daughter, Ensleigh, now eight, and we couldn’t wait to have a baby together to complete our little family.
Living with TJ’s parents, we started looking for a place of our own.
So far, I’d had a textbook pregnancy but, at a 14-week ultrasound, the doctor looked concerned.
‘There’s something unusual with the blood flow through your baby’s heart,’ he said.
‘What does that mean?’ I fretted.
‘Hopefully nothing,’ the doctor reassured.
At an 18-week scan, there was more news.
‘I think we can see amniotic bands on your baby,’ a doctor said.
READ MORE REAL LIFE: ‘A rare genetic disorder broke all my baby’s bones. This is his life now’
I trembled as they waved the wand across my belly.
We’d never even heard of them. Our heads spun as the doctor revealed our baby had amniotic band syndrome – a rare condition involving string-like fibrous bands inside the amniotic sac that could wrap tightly around the body, constricting it.
If one wound around a limb, it could cause severe damage or even amputate it.
But it was too early to tell exactly where the bands were attached on our tiny baby.
‘Only time will tell how badly they might affect him,’ the doctor said.
‘I don’t care how he looks,’ I told TJ.
‘We’ll love him to bits no matter what,’ he replied.
As my pregnancy progressed, we were due to sign a lease in early June, and things were falling into place, but the uncertainty around Shiloh hung over us.
At my 31-week scan, we saw our first close-up of Shiloh’s face.
On screen, a large open line ran through his cheek where the tissue hadn’t joined properly.
‘The amniotic bands are attached to the baby’s face,’ doctors explained.
Then came another bombshell. ‘You need to be admitted to hospital,’ the doctor said, explaining Shiloh’s cheek was open.
Going to hospital, I was too far along for doctors to remove the bands in utero.
So I was put on bed rest and monitored.
We had to back out of signing the lease, but TJ’s parents said we were very welcome to stay.
Instead of celebrating at my baby shower, I spent 20 days in hospital.
On June 23, 2025, my waters broke and, the following day, at 33 weeks and six days, our baby boy arrived via C-section.
I wept with relief when Shiloh was lifted from my tummy and let out a cry.
Weighing 2.4kg, he was whisked away to NICU.
TJ followed while I was recovering.
Cuddling Shiloh later that day I was delighted.
‘Hello little man,’ I cooed.
Seeing his face was confronting. The band had indented his chin, pulled down his lower lip, created a cleft in his left cheek and affected his right ear.
But TJ and I were in a love bubble with our perfect little bundle.
‘When he is a bit older and stronger, we can close the facial cleft and reconstruct his lip and cheek,’ the specialist said.
So long as our baby was okay, that was all that mattered.
We didn’t care how long it took to fix him.
Our precious boy spent 13 days in NICU before we could take him home.
Shiloh fed from a special two-chamber bottle designed for babies with clefts, and had medical check-ups every fortnight.
So resilient, he grew into the happiest little bub.
On February 24 this year, at eight months old, Shiloh underwent his first reconstructive surgery.
For two hours, surgeons worked to repair part of his cleft, reconstruct his bottom lip, remove a skin tag near his ear and built up his sunken cheek.
It was a success and in July, surgeons completed the reconstruction of his mouth, so his top and bottom lips and corners now meet beautifully.
Shiloh’s now one and the busiest, cheekiest little boy.
We’ve moved into our own apartment and it’s a joy watching him scamper around doing his ‘zombie crawl’, opening drawers and getting into everything.
His big sister, Ensleigh, adores him. When she stays with us, she helps make bottles and change nappies.
As Shiloh grows, he may need further reconstructive treatment on the ear damaged by the band.But for now, watching him meet his milestones is a blessing.
I hope our story gives other frightened families facing amniotic band syndrome hope.
It’s terrifying, but looking at our happy little boy now, I can hardly believe how far he’s come.
We couldn’t be prouder.
To help visit gofundme.com/f/donate-to-shilohs-surgery-and-familys-future
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