A rare condition means my girl, one, cries tears of BLOOD – strangers ask what wrong but she’s so brave

THIS LITTLE girl cries tears of BLOOD due to a rare cyst-filled tumour on her eye.

Business support assistant Nina Brown, 30, from Dunstable, Beds., gave birth to her daughter Millie, 22, months, in December 2018.

Much to the surprise of Nina and husband Alex, 40, Millie was born with a swollen eyebrow which was later confirmed to be a lymphatic malformation – a benign tumour made up of fluid-filled cysts.

Nina and Alex were told it wasn’t affecting Millie's vision at that time and that treatment would be considered when Millie turned two, but in May 2020 her eye started to bleed.

After consulting doctors, it was explained that lymphatic malformations can spontaneously bleed and in Millie’s case, it was obscuring her vision.

Millie started treatment at Great Ormond Street Hospital in July and underwent a procedure called sclerotherapy that involves injecting medicine into blood or lymph vessels causing them to shrink.

Following her first round of sclerotherapy, Millie developed swelling behind her eye that pushed it from its socket and made her vomit from the pain.

However, Millie has since had two more treatments, each spaced six weeks apart, and the cysts behind her eye have almost disappeared – though they may be triggered in the future with hormonal changes such as puberty or pregnancy.

The family have been approached by adults and children that have asked about Millie's 'bendy eye’ – something the family finds hard to deal with and don’t want to impact Millie.

Nina contacted a charity, Changing Faces, to get advice on how to deal with the comments, and received support and guidance on how to handle situations in the future.

Mum Nina now shares Millie’s journey on social media in a bid to raise awareness and meet other people suffering from lymphatic malformations.

“We first found out about Millie’s malformation when she was born – my husband noticed her swollen eyebrow and told the midwives,” Nina said.

“Two different paediatricians said that it was just swelling from how she had been positioned in my womb and that it would go down after a few weeks.

“It didn’t so our local hospital referred us to Great Ormond Street and an MRI scan confirmed it was a lymphatic malformation.

“We were told it wouldn’t affect her vision and that treatment would be considered when she reached the age of two.

“However in May, her eye started bleeding – it was like she was crying blood. We were really concerned as it was so unnatural, and we had no idea if that was normal for her condition.”

Millie was examined at Moorfields Eye Hospital in London and then referred back to Great Ormond Street again.

“The doctors decided to begin treatment early because it was now impacting her vision,” Nina said.

“She began sclerotherapy in July. We were extremely nervous because she had to be put under general anaesthetic.

“After her first treatment, she was very bruised and swollen. She suffered a bleed behind her eye four days after the surgery which caused her eyeball to be pushed from its socket.

“It was awful – the pressure and pain caused Millie to vomit and she had a big black eye after the treatment.

“She then spent three more days in our local hospital on steroids and morphine before finally coming home.

“The treatment continued six weeks later with the next round of sclerotherapy, and this was harder as she’d had such an awful experience the last time.

“We questioned whether or not we were doing the right thing but ultimately we went with the doctors’ advice to go ahead as it would be best for Millie in the long run.”

Her doctors are so pleased with her progress after three rounds of treatment, they believe she won’t need any further treatment for the foreseeable future.

Nina decided to start an Instagram page documenting Millie’s journey.

“Social media has been an amazing support for us, and we’ve been able to connect with so many other families affected by lymphatic malformations,” she said.

“Online, we always get lovely comments from other people and share experiences, but in the street people ask us what has happened to her.

“Adults assume she has fallen over but children will ask why she has a bendy eye. We were at the park in August and a little boy was playing with my son, Isaac, four, and he said he didn’t like Millie’s eye and that it looked funny.

“Isaac told him he was being unkind – he didn’t know I was nearby and could hear, but I was so proud of him for sticking up for his sister.”

“We were worried about what this all meant for her future and what other children might say when she goes to school, but we are determined to raise Millie to be confident and love herself regardless.”

For more see @milliesmalformation.

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