Baby Liver Hemangioma (extreme case) - Vascular Birthmarks Foundation Forum
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  #1  
Old 09-28-2013, 09:22 AM
J.Boolaky J.Boolaky is offline
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Default Baby Liver Hemangioma (extreme case)

Hi,

I'm new here with the story of my daughter one year on since we discovered her liver hemangioma. At the time (sept 2012), I recall how difficult it was to get information about the disease and how stressful that was, reading through this forum has helped better understand the disease and how to tackle. Hopefully the information I will share today could help some others.

At 4 weeks old, we discovered several hemangioma (strawberry marks) small marks throughout the body of my daughter, none extremely large but there were around 7 of them in total with biggest 2 cm wide. Midwifes said nothing to worry about and that many babies get and that it fades away after a while. How wrong they were!

At 5 weeks old, our daughter started having crying a lot and we couldn't understand what was wrong, she was crying so much that was struggling with breath and starting to turn blue. We saw our GP, who couldn't figure out what was wrong but said something doesn't look right and to rush to A&E, this was all so quick...

At A&E, they could identify by touch that the liver was enlarged but didn't know the cause at first till further scan (ultrasounds) taking a few days. It was multiple large hemangiomas on the liver (rare but possible), all this hemangiomas required much more blood into them (hemangiomas are loads blood vessals) and the heart had to pump so much blood for them that couldn't cope at that young age.

Our daughter had spent 4 weeks in intensive care soon after that and we tought we could lose her. As soon as stable we were on propranolol, a medicine discovered by change in 2008 but on the right dose would help reduce the legions...It was a terrible time to say the least with the constant struggle with the medical team to get onto the right dose and avoid a complex operation. Things got better after a few months and the very regular ultrasound showed slow but continuous shrinking. 1 year on and the ones on the skin are almost gone but the liver ones are yet to completely tackle but optimistic considering progress. I understand that once these lesions are gone, they are gone for ever.

Now on 2mg/kg/day and starting the processing of weaning off...Our daughter is doing well and caught up on growth to normally. Obv lost loads of weight during first 3 months at hospital.

My advice for other parents:
- if more than 3 hemangioma on skin, ask for ultrasound on internal organs and closely monitor baby breathing / crying / colour.
- if treatement is required, get to know as much as possible on propranolol, in our case it was a life saver. The doctors would increase only if blood pressure is stable, but in babies blood pressure is not always accurate if not done via a blood vein which could restrict getting the right dose of propranolol.
- Get the best hospital for liver hemangioma, we were at kings college hospital in London.
- Don't stress, challenge the medical team. They might feel as experts but make them realise that we not stupid as parents and we do understand technical diseases and medications, ensure you do your research online altho difficult sometimes. I spent days and sleepless nights to find out all I could about our daughter condition. I'm not sure our daughter would be where she is if we didn't know as much about disease and treatment.
- no side effects from propranolol in our case, but I hear about cold hands and feet so keep an eye.
- make sure monitor the hemangioma size all throughout, measure yourself or ask doctors to graph this for you.
- make sure you understand blood test results and keep an eye on this for anything unusual.
- hemangioma growth would be very fast in first few weeks (per our case) but once it had stopped and started shrinking, we had seen no increase so far, but again weaning process of propranolol just starting 1 year on.

I wish I had read a similar thread 1 year ago as per above when it all started, as I know how frustrating it can be not to find info quickly enough. I hope this can help other parents.

Thanks for reading.
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Old 09-28-2013, 05:02 PM
missy missy is offline
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Hi and welcome!

Thank you so much for sharing your story. It certainly will help other patients and parents who find themselves in your situation. Good for you for challenging the physicians and keeping everyone on their toes.

Glad to know your daughter is doing well...that's wonderful news!

Keep coming back. It's the only way other parents can get the help they need!

Missy
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Old 09-29-2013, 05:05 AM
smurph smurph is offline
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Wow! Thank you so much for sharing. It is great to hear how well she is doing and to read your suggestions. I'm sure they will be helpful to others in similar situations!!!

Shannon
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Old 01-08-2014, 07:22 PM
summercagle summercagle is offline
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Thanks for the information. I am new to this site. I have a 21 month old that has four hemangiomas her dermatologist at Texas Childrens in Houston Tx told me I did not have anything to worry about she only worries if they have 5 or more? So now I am kind of worried. Her biggest one is on her belly button it cover her entire belly button and for the past few days shes been crying and grabbing it saying "ouch" and will not let me even touch it or get close to it. She has a small one on the lower part of her back and around it always looks like bruises.
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