Hi-5 for Poppy

Happy Easter everyone! 🐰🐣💜

What an incredible year of new adventures!

Poppy has almost finished Kindergarten. 🙈

I wish I could go back in time and tell the emotional mother holding her newborn, premie, limb different baby just how wonderful life will be.

I’m fiercely proud of Poppy’s uniqueness, her abilities that blow us away every day, and I can only hope and pray that one day she will feel the same way too.

Merry Christmas to all of you.

We hope to share a bit more of our journey in the New Year.

Poppy’s mumma 💜

TODAY announces the newest Ge**er baby, Isa, who has a limb difference Meet Baby Isa: 'Her smile lights up a room."

I still remember a family member asking “what did you do while you were pregnant to cause this?” There was no ill intent by this question, just ignorance.

I did not cause my child’s limb difference. I certainly spent the first few years of her life blaming myself. But there was nothing I could have done differently.

This is the size of a baby when a limb difference occurs. The size of a poppy seed.

How fitting that we named our precious girl Poppy! 🥰

🖤A poppy seed🖤
The size of a baby when the limbs begin to develop during pregnancy. Weeks 4-8. After week 8 the limbs simply continue to grow in size.

Read that again.

Symbrachydactyly [sĭm-brăk′ē-dăk′tə-lē] is rare and affects about 1 out of every 32,000 babies. While the cause of symbrachydactyly is unknown, it is thought to be from an interruption of blood supply to the developing limb during those early weeks of pregnancy. There is no link to anything the mother did or did not do during pregnancy and there is also no genetic connection. Sometimes, it is part of a genetic syndrome called Poland syndrome. This causes an underdeveloped chest muscle on one side of the body. In many cases bones will be missing from the fingers and some fingers or toes may be missing altogether.

Can you even imagine how microscopic of a blood supply blockage it would need to be at that size of development…the size of a poppy seed? 🤯

My daughter was originally diagnosed with Amniotic Band Syndrome at birth, which is a common misdiagnosis due to its similarities. But ABS happens when fibrous bands of the amniotic sac (the lining inside the uterus that contains a fetus) get tangled around a developing fetus. Like symbrachydactyly, it is also not genetic and the exact cause is unknown. Most children with ABS will have bands on more than one part of the body. ABS affects about 1 out of every 10,000-15,000 babies.

I best explain the difference to others as symbrachydactyly happens internally, while amniotic band syndrome happens externally of the growing baby. The biggest difference and sign to differentiate the two if no clear amniotic bands are present is the existence of finger nails. This was what led the hand specialist to immediately be able to identify that my daughter had symbrachydactyly, not ABS because of her teeny fingernails on her left hand. After all I have learned in the last year, I am honestly surprised this does not happen more often or is more well known. It’s why I feel it is so important to increase awareness. The growing human body is really a huge miracle!

'Life is tough my darlings, but so are you' - Stephanie Bennett-Henry 💜

New Leaves Photography By April Queanbeyan/Canberra

Great job Lorna Jane Active 👏 💜

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This may be a little too confronting for me. I’d love to hear feedback from anyone who does decide to watch it. History should not be forgotten. Hopefully this short film will spark some thoughtful conversation. 💜

Watch Forgive Us Our Trespasses | Netflix Official Site Targeted by N***s as they hunt down and murder people with disabilities, a boy with a limb difference makes a daring decision while running for his life.

It makes me so angry that 6 years later, Drs are still recommending termination for children with limb differences. Thank goodness this mum chose life.
Dealing with the “unknown” is scary as hell, but living with the unnecessary loss of a healthy child is far worse. Drs need to stop the fear mongering.
Had I listened to a Drs advice 6 years ago, my life would be so incredibly sad and empty. It is for this reason that I will advocate for limb difference awareness until the day I die.

Doctors asked if I wanted to abort my baby girl. I wouldn’t change her for the world ‘As soon as he shut the door I sat up, I couldn’t breathe I was crying not knowing what was going on.’

Merry Christmas from our family to yours!
Thank you for following our little girls journey & helping spread awareness of . We look forward to sharing more of our journey with you in 2022. 🎄

Poppy has patiently waited for this moment since the start of the Covid-19 pandemic. To say she is excited is an understatement. What an incredible week we have had. Thank you to our beautiful team at APC Prosthetics & amazing OT at Westmead Children’s.

Our beautiful girl graduated from preschool today.
Look out world!

World prematurity day ❤❤ Thinking of all the families with little ones in NICU or SCN.

To the parents that have to leave their tiny babies in the hospital without holding them, changing nappies with your arms through the holes of the humidicrib, managing all the tubes and getting up at all hours of the night to stare at an empty cot and only pump milk, I see you.

I was you ❤❤❤

One of the hardest times of our lives but also amazing to see such little fighters.

Hats off to the amazing doctors and nurses who work around the clock with these little miracles