Saturday, November 8, 2008

Bella was kissed by an angel and that makes her extra special....

I took Bella for her surgery consult yesterday to discuss the removal of her hemangioma scar. It was an informative appointment but also one which left me feeling anxious and unsure, initially.

Here's some history....Bella was born with a hemangioma on right arm. It grew rapidly and by the time she was 2 months old, it had ulcerated so deeply that muscle tissue was becoming exposed. It would bleed profusely for no apparent reason, which was extremely frightening.

Thankfully, her pediatrician was also a dermatologist and he gave us his home number for emergencies....there were plenty. He met us at his office many, many nights and even spent Christmas day 2004 away from his family for a few hours to help us stop the bleeding that had started in the middle of the night, which we could no longer control on our own.

The worst part was that the ulcer was so incredibly painful for her that she would cry endlessly, which would reduce us to tears just seeing her in so much pain. We tried every topical cream we could think of to help with the pain and even dosed her up on tylenol with codeine at certain points to help manage the pain. She endured painful steroid injections, laser treatments and cauterizations....we sought several professional opinions as well.

At this point, we were more concerned with the profuse bleeding than anything else.  There were times we were frightened that she'd bleed to the death right there in our kitchen, as we tried desperately to control it.  We had to find a way to get that under control and our doctor had tried just about everything he could think of.

Someone I knew on a message board happened to do medical research as her job and she forwarded me an article on something called Gel-Foam, which was similar to styrofoam. We could cut it to fit her hemangioma and it would end up absorbing the blood.

Along with this, we used Regranex...another miracle drug (in our eyes), which was typically used to heal ulcers on diabetic patients. Between these two things, we were able to get things back under control and we were finally starting to see some healing.

Around this time, we consulted with a doctor down in Beverly Hills (Dr John Reinisch) who has a vast amount of experience with surgical removals of hemangiomas. I spoke with him one night on the phone and I was so impressed with the information he shared with me that I felt strongly that we should pursue surgical removal of Bella's hemangioma.

Even though it was healing, it was still in horrible shape and we weren't sure what the outcome would be. We met him in person while he was here in Northern CA and once he took a look at her arm and saw how well it was healing, he advised us to just let nature take its course. He said it would continue to heal but she would probably be left with extensive scarring and plastic surgery would be a more realistic option at that point, around the age of 4-5.

Here's a link to the album where we've kept her pictures of her hemangioma at various stages....some of the pictures are graphic so I don't want to post them directly on the blog in case anyone would prefer to not look at them.

Anyway, so here we are in present day, and the plastic surgeon we saw on Friday examined her arm and then discussed the process she would have to endure to have reconstructive surgery. I was relieved to learn that he didn't think her muscle tissue had been too damaged to cause her to not have proper function of her arm. He had her lift her arm and bend it and he seemed to think that she has perfect functioning, thankfully. So that was one thing out of the way.

The process, as he explained it for the reconstruction, would include putting tissue expanders under the skin in the back of her arm to stretch out her skin. This would involve a surgical procedure to put the expanders in, plus several visits to increase the expanders, and then another procedure to have the expander removed.

Once there was sufficient skin to cover the scar, he would cut the scar out and pull the new skin forward over where the scar had been. He said it would be a lengthy process, with risks, of course. She's never been under anesthesia so we're not sure how she'd react.

 At her age, his concern was how she would deal with the expanders. She wouldn't be allowed to engage in certain activities that might pose a risk of interfering with them...and of course the process is not very comfortable.

The biggest factor, however, is that he didn't feel her arm would look any better after reconstructive surgery. She'd still be left with some scarring, more specifically an H-shape scar which would cover her bicep. He said her arm will never look perfect....but I'm not expecting perfect.

He did say that the extra saggy skin that she has in the crook of her elbow could easily be removed and that's what he would suggest. I asked him about skin grafting from another part of her body and he didn't feel that was any better of an option.

Ultimately, he said the decision was up to us. He just wanted to be honest in saying that he doesn't think surgery will necessarily improve the look of her arm. He suggested we might be better off waiting until she's older and can make an informed decision for herself.

I noticed Bella hadn't said much since we left his office. When I asked her what she thought, she said, "I don't want him to cut my scar off. I like it."

 I asked, "Does it bother you that your right arm doesn't look like your left arm?" and what she said brought tears to my eyes...."No, it doesn't bother me...I think it's pretty and I like it. I want to keep my scar. It makes me special".

 It brought me back to a time awhile ago when some kids wouldn't play with her at the park, saying her arm was "ugly". She had cried. And that's when I had told her that her arm is what makes her extra special and that is where she had been kissed by an angel before she was sent to us. I was so happy that she had remembered that and, most importantly, believed that....she felt special because of it and it's a part of her and she wants to keep it.

But there was a nagging part of me that felt that she may feel this way now but what about a few years from now when she's 10 and she starts becoming more self-conscious about her looks....or when she's 15  and outer appearances start to become even more important. I suppose I can't worry about that right now.

Obviously, it's not bothering her as much as I thought it might have been...and if she wants to keep this part of her, then who am I to argue with her. Maybe in a few years, if it is bothering her, we can pursue reconstructive surgery at that time. It'll be her decision.

And in the meantime, all I can do is keep encouraging her positive attitude....I'm beyond thrilled that when she looks in the mirror, she likes what she sees.


Carla said...

Oh she saying she loves her scar brought tears to my eyes. There is a family link on my blog - Agency friends, Miranda Joy, who is going through the expanders to remove a nevus on her face. She's on her 3rd set I believe. It looks fairly uncomfortable to me, so I think waiting is a great choice. Especially as she is not bothered by it.


Now...where can I go to teach that kid on the playground a thing or two about playing nice.

Leslie said...

Helene, what a wonderful story. You are obviously doing something so right that she is so secure.


Stacey said...

I'm new to reading your blog and you don't know me, but I had to comment on this one. I'm glad that you asked Bella what she thought and that you're honoring her wishes. I think she'll grow to be a more accepting person because of that scar. You've taught her well, so far, it seems. Keep up the good work. We need more loving people in the world. ;o)

Heather (How to be a Woman..?) said...

I think you have one amazing little girl in Bella. Brought a tear to my eye.

Doré said...

Kudos to Bella for embracing her scar and knowing that she is just as beautiful with it. You have an amazing little girl!!

Michele S said...

Helene, this brought tears to my eyes. She IS special.

I think you should wait. I have no idea how you could guarantee at her age that she wouldn't engage in activities that would endanger the expanders. It would be too difficult. And then for it not to improve the appearance?

You are doing such a great job. I loved this story.

Hajar said...

I'm so glad you asked your little darling's opinion before imposing such an uncomfortable procedure on her! Waiting is a good idea, especially since the surgery is only for aesthetic purposes. She can always wear 3/4 length sleeves if she doesn't want it to be visible to just anybody.

Farrah said...

That's so amazing that she likes who she is regardless of those from the past. I say it's good that you listened to her and to just wait on the surgery. If later down the road she wants to pursue it then relook into (besides, it may heal more later),in the meantime be grateful that she loves herself completely.

Kate said...

Oh man, that's a great post. She's such a sweet little girl. That's so crazy that it has kind of metamorphed over the years, it looks so different from how it started. You're doing a great job with your kids!

Creative Junkie said...

Her reponse about her scar made me tear up. Kids are so resilient, aren't they? They could teach adults so many things.

My friend's son had something similar on his nose. It grew quite large and his nose became slightly deformed. It eventually faded completely, but the misshapen nose is still there. But it's who he is, kwim? She opted for no plastic surgery at this point and it doesn't seem to bother him anymore and he's 13 now.

Your beautiful little girl is such a trooper. I'm so sorry she had to through so much pain.

heather@it'stwinsanity said...

She is such a sweet girl! She has been through so much with the hemangioma already so it is great that you are letting her choose what to do about the scar.

I read your blog from time to time and had never even noticed Bella's scar before. She has such an adorable grin, how can anyone focus on her arm?

Rugger Mom said...

Awesome awesome awesome and awesome. Love Bella, love her arm.

Kim said...

"Out of the mouth of babes."

Joy said...

That is a very cool story.

ines said...

OMG Helene, I had never seen a photo of this child's arm and had NO CLUE how extensive this situation has been. It broke my heart to see this wound. You are so amazing and clearly, she is turning out just, like you!

She is so blessed to have you as her Mommy and to have your wisdom to lead and guide her through life.

She is an amazing person already and I am in AWE of her perspective.

You go GIRLS!

hugs and love, ines

Anonymous said...
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twinmama said...

Helene, you are a good mommy and have such a mature little girl.

Ironically, Peanut has an appointment with a dermatologist TODAY for her hairy nevus on her arm. I am so glad I read this. I have been quite nervous for her.

Marcia (123 blog) said...

My heart broke just a little bit reading about the interaction on the playground.

Kids can be so mean.

But I love, love, LOVE how you handled it, Helene.

You're helping to instill such confidence in her.

PS love the baby pics! And off to read the old story :)

I figure that if the children are alive when my husband gets home at the end of the day, I've done my job.

----Roseanne Barr

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