Keith and I (Jennica) have three fantastic kids: Adelaide (born 2008), Clarence (2010), and Eloise (2011). Adelaide was born with a port wine stain on the right side of her face, which looked like a big, red-wine-colored map of China masking half her face. The port wine stain is a proliferation of blood vessels that grows with her. If left untreated, the mass of blood vessels would continue to grow thicker and darker, eventually getting nodular and interfering with functions like eyesight.
Luckily, treatment is available in the form of regular laser surgeries at Children’s Hospital. After her birth, the dermatologist originally estimated that she would need between 12 and 20 surgeries, but her stain is turning out to be more resistant than anticipated. Every time she grows, the blood vessels beneath the skin grow, too; it’s a constant weed-whacking battle. We’re well past 40 surgeries now, and the stain is still quite visible. (Luckily, Addy loves it and wants to keep it!)
Due to the effective treatments and our awesome surgeon, the stain has (in Keith’s words) faded “from grape jelly to strawberry jam.” It’s a lovely shade of pink now, especially in sunlight! However, each treatment bruises the blood vessels beneath the surface for about a week, usually in a grid pattern, turning the stain a mottled dark purple – that’s usually when people ask about it.
Our goal is to raise a confident girl in today’s world who loves herself, loves her beauty, loves people, and shows grace and gratitude even when people are less than perfect toward her. Please feel free to leave your comments, experience, & insight!
To send me a direct message, you can either use the form below, or send a message to email@example.com . I love being connected with others!
Hello! My three month old granddaughter was recently diagnosed (confirmed) with port wine stain on her face. My daughter is overwhelmed and does not know whether to proceed with the laser surgery. Her fear is “changing” her and later making her baby feel like something was wrong with her but her husband and her both fear future bullying by kids/people. It’s shocking even now how ADULTS react and say exactly what your website maje is called “what’s wrong with her face”. It’s difficult. not to get defensive and go into grandma bear mode.
I read through some of your sharing and I am in tears (joy) because I feel I found someone who can relate to what we are feeling. I will be sharing with my daughter as well.
Thank you for sharing your daughters story and I look forward to hearing more.
Carmen, thank you so much for leaving your comment here! I am so glad you found me!! I apologize for the delay in responding — the end-of-school-year craziness hit me harder than I expected! I would love to hear more about your lovely granddaughter. Please feel free to email me (firstname.lastname@example.org). I’ll comment here again in the next few days with a few links to my posts that might be most helpful to you all as you process the birthmark and its impact. There’s a lot to think about! Please feel free to reach out any time; I love talking to other parents and grandparents walking this road!
Hi again !
As promised, here are a few posts that might be relevant to your family. 😊 You might have already seen these, but just in case, here you go:
We totally faced the same feelings that your granddaughter’s parents have when we wondered whether or not to treat her face: https://whathappenedtoherface.com/2015/05/08/decisions/
We didn’t want her to think she was flawed! But we decided to treat it because medically, it was necessary. Port wine stains keep growing with the child, so as long as she’s growing, it’s growing. She’s had 43 treatments (an unusually high number), and it’s still not gone! It would have been massive if we hadn’t treated it early. So, if I may offer advice, I recommend treating it at least a few times while your granddaughter is young (and those blood vessels still respond to treatment), because even after a few treatments, her parents will still be able to choose to ‘stop’ for a while if they want to. Similarly, Addy really wants to keep her birthmark, so we’ve slowed down treatments; that way, we ‘weed-whack’ any new growth but try to keep the color where it is currently.
This one might assure her parents that they’re not alone:
And this one might help give some guidance if they do decide to go in for a laser treatment:
And I know this won’t be relevant for a while, but in case you are all wondering how to talk to your granddaughter about her port wine stain, these 2 entries might help. I know that we were all wondering from the day Addy was born, “How in the world will we talk to her about this?”
I hope these help. 😊 Feel free to contact me any time!
Hello! Interested in getting permission to use a photo of Addy (here – https://whathappenedtoherface.com/2013/08/22/when-we-thought-about-treating-baby-addys-port-wine-stain/ – or other) within an online Bioethics course. I’m happy to give more details. Let me know how I might get in touch with you other than on this website.
Hi there! Happy to help – email is email@example.com . Thank you for your interest – I’d love to hear more about your project!
Hi. Can you tell us how Addy is doing now? Did she reach the maintenance part?
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Hi, I just stumbled upon your blog and I am thrilled to have found it. My daughter was born in July with a port wine stain almost identical to your daughters. It is mainly on the central area of her face and we are planning on starting laser treatments when she is six months old. (She was a preemie born at 30 weeks and is now at home on oxygen, so we have to wait until she is off of that to begin.) I have a lot of the same feelings and emotions about her stain that you have expressed… Obviously I think she’s beautiful and perfect in every way, but I also know how cruel kids can be. I just pray that my husband and I can give her confidence so that she can handle all of the stares and comments with grace. Your daughter is beautiful and it seems that she is extremely confident. I am excited to follow your blog and hopefully learn how to instill that same self-worth in my daughter as she grows. Thank you!
Thank you so much for your comment! It made my day. 🙂 I’m glad to be of some encouragement. It’s overwhelming enough to be a new parent (of a preemie, no less!), and then more so to have something unique like a port wine stain thrown on top of it all.
I hope you continue enjoying the blog here! I’m learning more every day. Keep me posted on your journey, too – I love finding other parents in this situation!
I’m a parent of a disabled child who doesn’t always show his disability. I got questions all the time about why he acted this way; when he got older it was more of, what’s wrong with him? People can be cruel in how they present their questions but there are a lot of people I educated (as I am sure you have regarding your daughter’s port wine stain) about Autism and developmental delays. God bless you and your family.
Thank you so much! (Sorry it took so long to reply here!) I’ve heard another mother similarly talk about her autistic son, who’s high-functioning enough to confuse strangers when he acts out his autism. I can only imagine the dirty looks a mother would get when her older kid ‘misbehaves’ like a toddler! (A friend of mine would get dirty looks whenever her strong, solidly-built 3-year old behaved like a 3-year old in the grocery store, rather than the 5-year old she appeared to be.) And I’ve probably given such looks myself. Now that I’m older (and, I hope, wiser with 3 kids of my own), I’m slower to judge other parents’ kids, knowing that they might be younger than they appear or have a hidden disability like autism…