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.”

Read more here.

3 thoughts on “Hannah Hutchinson Fought Off Kaposiform Hemangioendothelioma with Kasabach-Merritt Syndrome”

  1. Danielle says:

    My daughter is currently 2 months old and is also fighting the Kasabach Merritt Syndrome with Kaposiform Hemangioendothelioma. We almost lost her at 7 weeks when her red blood cell count dropped so low that they had to do a blood transfusion along with a cryoprecipitate transfusion to help her fibrinogen level go back up. it has been a roller coaster as she is on a new medicine now that so far seems to be helping but is going to be a longer process. drs are hoping 6 months to a year. how old was Hannah when it went away the first time?

  2. Kelly says:

    My 8 month old son is going on his 4 month of treatment for KHE with KMS. His name is Bryer.

    We noticed a small bruise looking lump on his right cheek when he was about 2 weeks old. He was a full term c-section, no issues. Quiet happy lovable baby. The lump slowly grew larger but would almost have bursts of growth over a few hours. His pediatrician sent us to a ENT and we had an MRI done. She felt it was a vascular malformation or capillary hemangioma. When he was 3 months old, he took him to the ER because he woke up and the lump had tripled in size. He was treated with steroids and kept in the hospital. We had a biopsy done during this time. The results said he had a Capillary Hemangioma. When he was 4 months old, we stayed at the hospital overnight to start treatment for the hemangioma. He came home the next day and was fine. The following morning I notcied mild rediness on the tumor site but nothing dramatic. I called all throughout the day checking on him, received pictures of him to reassure me he was fine. I called my husband as I was leaving work(an hour drive) and he said he had laid the baby down for his nap and he was fine. By the time I got home from work about an hour later and relaxed alittle, my son woke up and his cheek was bright red and growing in size right in front of us. This time was different though, it was happening quick and very RED like he was bleeding under his skin.

    I took him to the ER, he has a CT Scan and it showed fluid collection. They drew his blood and we’re taking him into STAT surgery to place a draining tube in his tumor. Moments prior to his surgery, his blood work came back and showed he had a VERY LOW platelet count, red blood cell count and low fibrinogen count. He was taken in ICU and the next 48 hours changed our lives forever. At this point, his face was so swollen he couldn’t open his eyes, his skin was stretched so tight from the enlarging mass, it wa deep red/blue/black from bruising.

    They reassessed his biopsy results and he was diagnosed with Kaposiform Hemangioendotheiloma and Kasabach-Merritt Syndrome. He was intubated to secure his airway do to the location and started on Vincristine(chemo) and large amounts of Prednisolone. He also received 3 blood transfusions; platelets, red blood cells and cryoprecipitate. He was on over 10-11 medications; antibiotics, multiple blood pressure medications, sedatives, tummy meds, etc.
    It was not promising for our son.

    He is now 8 months old, happiest baby in the world. Since his diagnosis date, 4 months ago, he has received 13 blood transfusions, a port placed in his chest for blood access and chemo, countless medications but he is improving!!

    We have been weening his steroids and is almost off them, discontinued one of his two blood pressure medications, started to ween the other one. His chemotherapy treatments were weekly but has been switched to bi-weekly a few weeks ago. He receives pentamidine when he get the chemo. We were told when we started this journey that he would be on chemo for about 6 months.

    I have searched and searched for support groups or blogs or ANYTHING about our sons condition. There’s limited information due to the rarity.

    Just its nice to be able to talk to someone especially a parent who is going through this or has gone through this. It’s one of the scariest moments of our lives and we have a very strong supportive family and friends, but… They still don’t get it fully.

    I wish both your babies the best. They truly are the strong ones… I would have already thrown in the towel.

  3. Susan says:

    My son was born with KMS in 2009. He spent three months in hospital. He is now five and doing really well. No relapses and no meds for a couple of years now. There is light at the end of the tunnel but it’s a long hard road.

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