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Tattianah's story

Tattianah was diagnosed with an immature teratoma, a type of germ cell tumour, in 2019, when she was just three months old.  Her mum, Topanga, shares their story:

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A difficult pregnancy

In 2018 I found out we were expecting our second daughter in one year. We were over the moon!

My pregnancy however was full of difficulties. I was really poorly throughout. I was constantly sick, suffered from terrible haemorrhoids and excess fluid caused lots of pain in my stomach and womb.

I always felt something was very wrong. Tattianah never moved much and I was terrified she would be a stillborn when she arrived. I was also scared that something would happen to me during the birth.

We had over ten scans throughout pregnancy, including the week leading up the birth. I was convinced something wasn’t right but the doctors and nurses dismissed my fears and didn’t seem to care. They told me that my baby was completely healthy and that I should calm down.

 

Scan picture

We were told there was no chance of saving our daughter

Months later, our daughter was born via C-section. Her heart rate kept dropping and she was taken to intensive care straight away.  They told me there was no chance of saving our daughter.
Tattianah was born with a growth on her nose, which was pushing her eye out. At first, nobody knew what this growth was and they didn’t know if it was cancerous or benign.
It came to light that Tattianah’s tumour was an immature teratoma, a rare type of germ cell cancer.
At first they said it was benign, but later it was classed as a sort of cancer and she was treated with four rounds of chemotherapy.

 

Baby with growth on nose

Treatment has caused considerable damage

The chemotherapy made all of Tattianah’s hair fall out, she was constantly sick and had seizures. She also had to undergo numerous surgeries to remove as much of the tumour as possible, which caused a horrendous infection on the surface of her brain.

Her surgery also resulted in epilepsy and Tattianah now has to take anti-seizure medication.

The surgery and infection has caused a lot of damage and one part of Tattianah’s brain is no longer working. The tumour had also pushed her left eye out of its socket and she is now unfortunately blind in one eye.

Baby with bandages on head

Where we are now and what the future holds

Tattianah is now nearly two years old, but her development is very delayed and she’s more like a newborn. She is trying her best to crawl and she is a very happy baby who just wants constant love, cuddles, kisses and attention.

They couldn’t remove all of the tumour in Tattianah’s head so the hospital has told us that if the tumour grows, she will need another surgery which is a big risk as she’s already had a massive infection on her brain. I don’t think she’ll survive another surgery.

Teratomas do tend to come back so it’s a matter of waiting. We don’t feel like she’s going to live a long life and we know it’s going to be very challenging. She will likely have difficulties talking and walking, but with a lot of extra support and patience from us, I hope we can get there. I just want her to be happy and to enjoy life as easily as she can, but for now, we just don’t know what her future holds.

How you can help

If you’ve been touched by Tattianah’s journey, help us invest in the high quality research that really matters which would otherwise go unfunded.

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