Monday, November 24, 2008

strawberry hemangioma


Many people have asked us about Laine's Strawberry Hemangioma. I would welcome any questions by families whose child has been born with one of these tumors. She had nothing more than very slight redness at birth. Even at one week old we were told it was a stork bite and would go away in a few weeks or months. Each day it got bigger, redder and the next morning I would see a change over night.




Laine at one month It grew fast the first months and we were referred to a Pediatric Dermatologist, Ophthalmologist and Hematologist. Laines tumor was considered Cavernous because it also invaded her eye cavity and was pushing on her eye changing its shape. We were seen every 2-3 months by the Ophthalmologist to make sure she didn't loss eye function. The Dermatologist wanted us to wait as most of these will go away on their own. It was hard to see her like that and not demand something be done but we trusted our doctors.


Laine at 2 months



We got many stares but that didn't stop us from going places. At story time every week I would end up feeling bad for the mommies whose child pointed at Laine and would ask if she had play dough or a pepperoni on her eye. Other mommies felt terrible about what their child was saying. My older daughter who was 4 years old would tell. me "mom people are staring at my sister" I think she has a gift of compassion because of it now. The comments from little ones didn't bother me. I would just tell them it was a birthmark. The rude comments from adults were the worst. I actually had adults say "what is wrong with your baby" Almost like they were disgusted from looking at her.






Laine at 8 months it keep growing









Laine at 9 months it peaked in the growth and stayed the same for a couple months
















Laine at 1 year We saw signs of it getting smaller and less red. We were so excited.


Laine now at 3 years old. As the Hemangioma has healed her eye shape is back closer to normal. She will not need glasses at this time. She has a little bit of skin puckering that maybe someday we could have laser surgery. Her doctors are very happy with all the progress. She looks at pictures of when she was a baby and asks about the boo boo on her eye. When we ask her what happened she says "Jesus healed it". For that we are so thankful.















11 comments:

Anonymous said...

Thank you so much for this post. It gives me a lot of hope for my daughter. She is two months old and has two Strawberry Hemangiomas. One is on her head, which has seem to stop going so I am hoping it will start going away soon. The other is at the outside corner of right eye and is still gowing. This is the one that bothers me the most. How big did you daughter's Hemangioma get by her eye before it began to go away?

- Sharon

JenD said...

It got to be about the size of a golf ball at the largest. This occured at about 9 months. The fast growing time was however between 4-6 months. Don't be too worried in the next few months. There is HOPE! Feel free to email me jadecker@bdumail.com with any other questions.

Anonymous said...

Thanks for posting your daughter's pictures and describing your journey with her. My daughter is 6 months old and her strawberry hemangiomas on her face continue to rapidly grow in size. I have had very unkind remarks from strangers ranging from "what did you do to her?" "did you drop her on her head?" and "what is that thing on her face?" It becomes hard to want to go out in public. Your pictures and story has given me hope, just like the other poster, that her ones will fade and go away. It is so hard just waiting around for it to happen, not knowing for sure if I am doing the right thing by waiting!

Jenny said...

This was good to read. My son has a hemangioma under his eye. It is blueish and looks just like a black eye. People actually make jokes about us hitting him. He is such a delight and I hardly notice it, but every time we go out someone makes a comment. Often people just think he fell. Thanks for sharing your story, pictures and patience.

Jenny

Anonymous said...

Hi, thanks for your post, it was interesting to hear your daughter's story. My 8-week old son has 20+ strawberry hemangiomas (and more appearing all the time). Some are now quite large, he has one on his face, several others on his head and neck, several on and under his arms, one in his groin area, a large one on his leg. Most worrying of all is on his chest, where he has one which has now developed a further area of swelling beneath the skin, much larger than the original 'red' lump, about 3cm diameter and sticks out about 1cm from his chest but getting bigger all the time. I am afraid of how big it will eventually get.
We have had some investigations, ultrasounds and an MRI scan,all showed no abnormalities internally, but since they were done his external marks have grown much bigger, and many new ones have developed.
Your post is re-assuring but I am so worried as I can't imagine how it would be if all of my son's strawberry marks swelled up to the size of golf balls, I'd be terrified to pick him up for fear of putting any pressure on them.
For now, we have a visit to his consultant pediatrician in 2 weeks but I feel I will have a battle on my hands to see a specialist.
I am scouring the internet for more information, and managing to terrify myself in the process, but your post was very positive, so thanks.
Sandy R

Leeanne (BluePinkie) said...

I saw the link to your blog in a Facebook group.
Thank you so much for your story. My daughter (19mths old) has a Hemangioma on her forehead and we hope that it will eventually fade. I had one on my back and it had faded by the time I was 4yrs old.

Leeanne xxx

Anonymous said...

I have to tell you how comforting your blog was to read. I just feel like most of the things that you read on the internet about hemangiomas are stories of parents deciding to remove them from their children. I have felt so guilty for trusting my dr (one of the best around) and waiting it out. To have run into your blog makes me feel that I am doing the right thing for my child and I commend you for reaching out to others and making them feel good.

Anonymous said...

I am so glad i came accross your site. My daughter has a hemangioma on her left check. I get stares and comments. i was wondering if you used propranolol or steriods as these are the drugs they are offering in the UK. I am quite scared and not sure what to do. My email address is lola.olatunji@redbridge.gov.uk. I will be grateful if you can advice me. my daughter, Adriana is now 15 months and i am worried that its not reducing in size. Thanks again

Anonymous said...

i want to thank you for posting this, my daughter also has a strawberry hemangiona and although its much smaller than your precious daughters was i still get comments all the time about it i dont even see it anymore but when im around others they sure are quick to remind me! our dermatoligist has recommended we leave it alone but shes almost a year old and we'd really like to take some kind of action before preschool...thank you for your story and picture your daughters are beautiful!

Tuhi said...

Oh every line in your post brings so much hope to both me and my wife. My daughter too has one Strawberry Hemangiomas. Consulted may surgeons and they all suggest cosmetic surgery but we are scared so have put it off for many many years and after seeing your post, to rest. I will wait and wait till it starts receding. She is just 6 months old now but sometimes I feel what would she ask me if it remains there and will she ask me "why did you not do anything for this daddy?" :-( But with this post, I am feeling much confident. BTW my wife said.. your daughters are very cute and I could not agree more. Love.

Tuhi said...

Oh every line in your post brings so much hope to both me and my wife. My daughter too has one Strawberry Hemangiomas. Consulted may surgeons and they all suggest cosmetic surgery but we are scared so have put it off for many many years and after seeing your post, to rest. I will wait and wait till it starts receding. She is just 6 months old now but sometimes I feel what would she ask me if it remains there and will she ask me "why did you not do anything for this daddy?" :-( But with this post, I am feeling much confident. BTW my wife said.. your daughters are very cute and I could not agree more. Love.