Just a rant 😔

My little girl is 3 and a half months, she has had a birth mark on her eyelid for the best part of 2-3 months now which has spread to the side of her head too. I took her to the doctors about 6 weeks ago (maybe longer) where I was told it was ā€˜untreatable’ and will eventually go away on its own. I went to the hospital today for a second opinion where now I’ve been told my daughter will need an MRI scan on her brain to see if the cause of it on the side of her head is because of the blood supply to her brain, I am in complete shock. I can’t believe I was fobbed off by the doctors for something that could potentially be serious. I have been prescribed a topical gel to apply to her eyelid/side of the head to shrink it and make it fade as if left untreated and it gets any bigger it will cause her eyelid to completely shut. Waited in the pharmacy for 35 minutes to be told it’s not in stock so now waiting again for it to be posted to my home address. I am utterly disgusted by the non existent level of care from ā€˜medical professionals’ in this situation. If I hadn’t of got this second opinion, it would be left untreated, with no scan of her brain also, possibly getting bigger and restricting her future eyesight. I’m absolutely deflated after today! If you have any similar stories, feel free to post them and may this be a reminder to everyone to ALWAYS get a second opinion!
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So my LO was born with a red eye lid, which has since spread to her forehead. I was also told it would fade over time...now after reading this I'm a bit worried it could be something more. Is there anything else to look out for? What does the red patch look like?

@Jelena I’ve messaged you a picture of my little girls! Hers is raised and extremely red, called a strawberry hemangioma! There’s other red marks babies can get which aren’t raised, are flat and a lighter shade of red which won’t be harmful xx

@Aliscia it is a strawberry hemangioma which is a birth mark, it’s because it’s on her eyelid is what makes it so severe because if it gets heavier it can close her eye shut. There is medications to give to treat it so they should’ve really spoke about stuff like that instead of completely telling me there was nothing they could do x

Most strawberry birthmarks clear up by 12 months of age. It did for us (not on eye lid) and for a friends Little one which was on eyelid. Hopefully this is the case for your little one. They do generally get bigger before starting to shrink.. but should hopefully stop growing soon. I've never heard of anyone needing at mri for them? Wishing you all the best! X

My daughter was born with this, not on her eye but on her belly, she’s now 6 this year and its almost completely gone you can only see now that it’s so light, unfortunately drs don’t know enough about birthmarks to fully help you. My son was at hospital regarding something else then got referred to dermatologist and then the dermatologist couldn’t help really so sent photos and we got referred upto Glasgow hospital for an MRI on his brain, it all came back clear but he’s is now awaiting genetic testing my son has different birthmarks tho he is covered in vascular birthmarks from a mutation in his genes unsure what mutation but his brain scan was all okay.

My little one had one on his neck, he's nearly 3 now. I was told his will disappear over time. By the time he's 6 or 7 yrs old it should be gone. His started out as a small pin prick in his neck and got bigger as he grew. The past year the redness has gone and more a mild purple colour. The birthmark has even started shrinking and become more flatter x

@Jessica it’s because of the pattern it’s spreaded into on the side of her head apparently it could indicate a blood flow problem to the brain… it’s all crazy to me right now! X

Sorry my daughter had same birthmark of this different area & my son is covered in birthmarks also he has had ultrasound, MRI and tests done for his if you need a chat x

It looks like my friends little girls birthmark. It was getting bigger and it's In her eyebrow they said they wouldn't want to try and remove it because there were so many nerves or whatever. Anyways she's 4 now and it's still there though less noticable and smaller as she got older. So it's possible it is a birthmark situation still

Wow this is shocking I'm so sorry! My little boy has a birth mark on his eye but it's been there since birth and is faint and flat so I've not been concerned but don't know whether to check now! It does actually say when you google birthmarks that any on the face should be checked to make sure theyre benign! I've also been dismissed by medical staff repeatedly with my boy, thankfully with smaller less frightening matters but it seems like it's getting worse

@Brittanie yeah it is a birth mark, I just think they’ve took a precaution for an mri because of the pattern and it being on the side of her head. They’ve prescribed me a gel to apply to help it shrink and not grow further which I’m glad about as I wouldn’t want it to get too heavy on her eyelid and force it shut

@Amber always best to get it checked but I do believe if it’s flat it won’t turn into anything as my biggest concern is if my daughters gets bigger and raises on the surface more it will be too heavy on her eyelid for her to open her eye 😫 it’s never caused her any discomfort luckily, I just hope an MRI comes back fine and the medication prescribed can start working šŸ¤žšŸ»

Completely valid for you to be concerned, well done for trusting your gut on this! Fingers crossed it takes effect for her soon šŸ¤žšŸ»šŸ¤žšŸ»

Hi Britney, so sorry to hear that you were not taken seriously by medical professionals. My son has a strawberry birth mark just above his left eye lid. We were worried it would affect his vision. We were dismissed by GPs and told that it would go away by itself. It ended up getting much bigger than it would have done if we offered treatment immediately. We were so concerned we decided to see a consultant dermatologist privately who advised us that treatment was necessary. She is the lead consultant in the area at Great Ormond Street Hospital so we really trust her judgement. My son is on oral propranolol medicine (he did need assessing by a cardiologist beforehand to check his suitability as its primary use is to treat high blood pressure). The oral medicine is said to be more effective than the topical gels. It is easier to administer too. The medicine really helped stop the growth and now he’s almost 6 months it’s likely to have reached its peak. Please DM me if you want more info.

That is a type of hemangioma. I can understand why they said it’s a birthmark and it would go away, but they should have actually sent you to the dermatologist to get a specialist to make that call. Depending on the type of hemangioma, some of them like a port wine type can stay for their lifetime. Others can go away or reduce in size by the time they’re in about 2nd grade. There are a couple different medications too. My daughter was born with one on her lip, but if you ever have any questions I can answer at least what I know from my experience. I hope for the best with your little! ā¤ļø

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@Britney my 10week daughter has this on her hand. I was told the same

I just want to thank every woman who’s commented on this post so far and shared their stories, it’s made me feel a whole lot better after a tough morning! Thankyou all so muchšŸ˜«šŸ’•

All 3 of my kids had the exact same kind of birth mark somewhere on their body. 90% of hemangiomas go away on their own by age 2. My 11 year old had the largest one of my 3 kids and hers still is pretty noticeable but my other 2 kids, who are 1 and 3, had theirs go away already. They are concerning when in a place that restricts blood flow or inhibits life in any way. I’m sorry you were brushed off. We were offered a beta blocker for my oldest to make hers shrink but declined, and we were offered laser and declined that as well. I hope you get the help you want and need!

Although the first doctor may* have been correct in what they had said. As my daughter had 2 one on her chest (that appeared after she was born) & one on her back (that was there since birth). Both have now completely disappeared. I'm pleased that you got a second opinion, I'd have done the same in your position because of where it is & how its spreading. I hope that its nothing serious & that something can be done. It shocking how much doctors fob people off, my firstborn was told that she had chicken pox when she was a baby right in the middle of lockdown. It wasn't & whatever she had, she had it for months & ended up hospitalised due to becoming poorly. You did the right thing by not backing down.

My son had this and his went away

To be honest when my babies started to show these they said if it’s around the eye or the fontenelle to go to gp and they can get something to make it slower or stop growing (that’s how I understood it) as it can be quite dangerous. I do feel like a lot of the time gps do that and shrug it off which is why I always try and go in armed in google research to back my worries. I had so many issues that were shrugged off even right after delivery that I just go ask my friend nurses or others for their experience before going to gp. Crazy! Hope your little ones okay!

I would be writing a complaint to your drs surgery. In my experience they are usually over cautious with babies, so it's surprising, did you mention it to your HV as they should have been able to tell you more as well.

My daughter is one and she was born with the exact same thing in her booty hole right next to it lol. It got a tad bigger but hasn't spread. I'm going to the vascular specialist in like two weeks to have her fully checked out. If they give me relevant info on it then I'll make sure to pass it on to you (: I'm going to a private one

My little girl has one close to her arm pit and my son had one in hes hip they will clear up just keep an eye on them to see that they are not growing! She shouldnt get bigger. But yeah i think there is nothing to worry about!

You did the right thing to trust your gut and get a second opinion. Please be careful with the topical gel though as I know really bad side effects people have from using it. There are a lot of people trying to get it banned in the UK🄓 just be careful to only use it as advised and if notice anything getting worse or other symptoms stop straight away. I hope your little one is okay though šŸ’— sending lots of hugs and I hope they get to the bottom of it quickly xx

My daughter has it on her back this the first time I’m seeing someone with the same thing

My baby has had them since birth and they told me they are hemangiomas you can see a specialist for them especially if she has more than 5 because they can also be in her liver. Our little girl has some in her liver so she needs to get the medicine for them everyday if she hasn't had them in her liver it would be optional but there is medicine out there for it

Ask dermatologist if they can put her on hemageol. My daughter has one in her upper lip and because it grows so rapidly it they gave her oral medicine since it can affect her eating or breathing

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