Hannah Hutchinson Fought Off Kaposiform Hemangioendothelioma with Kasabach-Merritt Syndrome
February 2, 2014
A Merseyside couple, who spent their first wedding anniversary watching their baby daughter fight for her life, wants to raise awareness of her rare condition to help other families. Baby Hannah Hutchinson was just four weeks old when she was diagnosed with a condition that affects only one in 100,000 children.
Hannah, now 19 months, suffers from kaposiform hemangioendothelioma with Kasabach-Merritt syndrome– which means tumors cause her platelet level to drop dangerously low.
Parents Victoria and James, from Stoneycroft, want to raise awareness of the condition and money for children’s cancer charity Clic Sargent. Mum-of-four Victoria, 35, said she first noticed something was wrong with Hannah when she saw a huge bruise on her stomach.
She said: “Hannah was fine when she was born and had a normal delivery. When she was four weeks old, I noticed she was a bit grouchy and then when I changed her nappy, I found a massive bruise on her belly.
“When you see something like that, you think either somebody’s hurt her or it’s meningitis so I rushed her straight to A and E. Initially, they didn’t know what it was. We had to have the nurse in with us because they thought we might have hurt her.
“Then they did a blood test and realised her platelet count had dropped dramatically.”
She added: “Hannah has really been a fighter. When she was four months old, we almost lost her.It was our first wedding anniversary, and we were in hospital with her.
“She started to bleed really heavily from the wound where they had removed her tumor. They gave her a blood transfusion and had to pump platelets into her, then she got rushed to theatre.
“A nurse basically saved her life that day.Hannah’s been through so much, she’s had chemotherapy, been on steroids and had 10 different medications to take three times a day.”
Hannah is still on medication for the condition, but Victoria said they hoped she was recovering.
She added: “We don’t know how long Hannah will have the condition. She relapsed just before Christmas, so we just have to wait and see what happens.”
Victoria said she now wants to reach out to other families whose children suffer from the condition.
She said: “We felt so alone when Hannah was diagnosed. All I wanted was another mum or dad to speak to. Eventually I found somebody, but they were in America. Now we’re in touch with a family in York as well.”
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