Brontës vascular tumour

Brontë was born 15th November 2024.

At around two weeks old her dad noticed what looked like a bruise on the side of her face. We took her to the doctors where they said it was a birthmark.

We came away and carried on with life as normal. But something was telling us Brontë wasn’t right.

And as the months went on she would scream for hours on end, be constantly unsettled, wouldn’t nap, wouldn’t sleep at night, would refuse her feeds and go hours without having any milk.

As a mother my instincts kicked in and I knew something wasn’t right.

A couple of months went by and the mark on her face was growing. Rapidly. It was protruding out, it was dark purple and hot to touch.

We took her back to the hospital and after many appointments, tests and an MRI scan they confirmed she has a “Kaposiform hemangioendothelioma” (KHE). Which is an extremely rare vascular tumour affecting around 0.179 per 100,000 children. And less than 1% in every 1.4 million people.

At 6 months old we got admitted to the children’s hospital where more blood tests were done. The results were petrifying. Her platelet and fibrinogen levels were critically low meaning that at any moment she could have bled out internally or externally as her blood didn’t have the correct levels to clot.

Brontë needed emergency transfusions which included a platelet transfusion, two cryoprecipitate transfusions and a full blood transfusion.

Soon after she was put on two different types of medications. One of those being an immunosuppressant medication making her immune system very low. There were signs of the treatment working and we felt like we were on the right path to recovery. After nearly 6 weeks in hospital we got discharged and made it home with her medication plan.

We managed 10 days at home. Then we noticed red flags. She was unsettled again and she was refusing her feeds and the tumour looked to be getting bigger again. We got admitted back in to hospital to be told that her platelets are still dropping. The medication isn’t working as it should.

And just yesterday we were informed that her tumour (KHE) has now progressed further turning it into something that’s called a “Kasabach-Merritt phenomenon”(KMP). This is a complication of her tumour which can be life threatening.

They’re now working out if her medication needs changing and this could include her starting chemotherapy treatment.

We were also informed that this tumour will never actually go, it’s just managed by medication. And they can’t tell us how long she will be on medication for, it could potentially be for life.

This has hit our family like a tonne of bricks and shattered our hearts and turned our world upside down.

But with your help we’re hoping that we can raise some money so that as parents our financial worries aren’t our main worry.

My maternity pay ends in a matter of weeks and I was due to be back at work in September. This is not going to be possible as Brontë needs my full care and attention and can’t start nursery until she is stable. But that being said the mortgage and household bills still need paying and as most of us know, this is hard off one income.

Any extra funds that are raised will be spent on some family time with Brontë when she’s stable for all the months that she has missed out on. Throughout her whole life she has known nothing but excruciating pain and discomfort and although it’s only 8 short months that she’s been here, for her, it’s been her whole life. She’s known nothing else.

We would really appreciate your support.

Love the Brooks family.

(Chris, Natalie, Sophia & Brontë)