I wanted to add some of my experience with a baby that had a cherry hemangioma in an awkward place…right underneath the eye’s waterline.
I’m not an expert in this field and our case turned out to be superficial despite our intense anxiety about it during the growth stage when she was a few months old. It is exactly as they say – even the most random bump can make a parent worry off a ledge.
Most hemangiomas on the skin are more of a cosmetic issue than a medical one. But our baby had it in a very precarious place…on the eye. Hemangiomas can develop underneath, internally, so unbeknownst to us, she could have the same eye Hemangioma doing permanent eye damage underneath.
I was sleuthing this hemangioma support Facebook group for months in covid-19 quarantine. I encourage you to join too! These ladies and mommas are so sweet. It was comforting to read and meet other moms with children impacted with hemangioma.
Bless everyone for being so brave and supportive of each other, motherhood isn’t easy. I mean, it SOUNDS scary. It’s a scary, long, hard-to-pronounce name! And it’s a total mystery for any other parent as you’re trying to explain to them why your baby has a huge red bump on their face.
“Is it contagious?” (NO!)
“Does it hurt?” (Depends)
“Is it cancerous?” (NO!…?)
I was waiting for May 15th so I could post this on Hemangioma Awareness month but really what’s in a date? I really wanted to share and add my story online so some moms out there going through it RIGHT NOW can be more supported than we were!
Our Baby’s Hemangioma
Our daughter was born ~absolutely~ perfect at a hearty 7.5 lbs and 19.5 inches. She was 11 days overdue, fashionably late.
I’ve never heard of a Hemangioma before. But by the time she was 2 weeks old, this red mark on her eye started getting redder and bigger. It was literally right below her eye waterline. The rate of growth made me worried that it could impact her vision.
Being a first-time mom, I wasn’t sure if it warranted a Hemangioma specialist. She was born right before things went into lockdown in the US during the coronavirus pandemic. Pandemic parents club woo!
During a scheduled pediatrician visit, I asked if it was going away soon…I thought it was an ‘angel kiss’ and it’ll just disappear in a month. But our pediatrician said it was a Hemangioma common in Caucasian females. In fact, our Pedi said it was going to get even BIGGER. My daughter happens to be half-white (and half-Chinese) so it’s not a far-off possibility. She’s our 半个美国婴儿 (half American/Asian baby!!)
My husband does vaguely remembers having a hemangioma when he was a baby, underneath his left chest cavity, and you can still see it today if you knew what to look for. On my side, a Chinese cousin living in Florida, on my father’s side has a daughter with a quarter coin-sized strawberry hemangioma on her cheek.
I guess now that there is a genetic component to it – it’s not that scary or lonely. No more “woe is my baby!”
My husband grew out of it just fine. My cousin’s daughter is almost 8 years old and her hemangioma was never medically treated. Her hemangioma has faded to a dull salmon red on her cheek. It never caused her any real harm. But our case…
Hemangiomas Near Baby’s Eye
When you’re a new first-time mom during a worldwide COVID-19 pandemic, the last you’re thinking about is showing off your beautiful newborn to everyone. All family that was supposed to come and visit us canceled due to high risk. Our elderly at-risk father lives with us. Grocery shopping was the only thing we did outside the house when things in the United States went into lockdown.
If my daughter’s hemangioma had not been in such an awkward place, I would have just chalked it up to bad luck and moved on.
I don’t mind a Hemangioma but does it have to land near the eye? But no, it was on her eye’s waterline! It’s on her eye like right now already! God this sucks. It’s basically “might be nothing or might be permanent vision damage.”
It was 1 mm away from scrapping and irritating her cornea. What if it got even larger? What if it was growing underneath? Babies don’t know causes of irritation, all I can imagine is her rubbing her eyes constantly and irritating her hemangioma and eye. She’s an infant! We would need to duct tape her hand because she won’t understand the discomfort. Parents have a hard enough time telling a toddler not to scratch their chickenpox…what are we going to do about an eye Hemangioma?
And what if the Hemangioma pops and bleeds when we’re not there 24/7 to watch her? Talk about at-risk for an eye infection! Would the blood go into her eye when she’s trying to sleep at 3 AM rubbing and rubbing her eye? Just thinking about that train of thought was nightmare-inducing for such a small baby during a global pandemic.
On top of that, babies with fevers or infections under the age of 3 months (which she was when her Hemangioma was growing) are mandatorily required to visit the emergency room. No parent wants to visit the emergency room. NO parent wants to visit the emergency room during an overcrowded Covid-19 pandemic that was peaking and putting our U.S. hospital system into overcrowded hyperdrive.
*Breathes into a paper bag*
Hemangioma Specialist & Treatment Choices
We scheduled an appointment with a Vascular Anomalies / Hemangioma Specialist since we weren’t sure what to do about this awkward hemangioma. Drugs? Surgery? Take a chance and wait?
Did you know there are only 2 Vascular anomalies / Hemangioma Specialist in the ENTIRE country? There is one specialist in San Francisco and one in Seattle. Thankfully – the one stroke of luck for us was we lived about a 20-minute drive from the Seattle Children’s Vascular Anomalies Center. Since we were so nearby, it would be natural to just get an appointment in person.
The bad thing was the waitlist. It would be a minimum of 3 months before the doctor could see us due to covid restrictions and new regulations on crowds. By then, when our daughter was about 4 months old and the Hemangioma was literally less than 1mm from scrapping her eyeball.
We were relieved to be squeezed into an appointment but we had to go back multiple times because my daughter was on the skinnier side of babies and they wanted to make sure before administering a medicine that she was not skinny because of underlying health issues. We went to get EKGs just to see if her heart is pumping correctly. Then we went to the Pediatric Gastrointestinal specialist to make sure she doesn’t have reflux. (She didn’t have reflux, she was just a small baby.)
I do appreciate that they were so careful of making sure our daughter was OK before administering the medicine.
Medical Options to Treat Hemangiomas & Angiomas
Hemangiomas are “noncancerous growths of blood vessels…usually grow for a period of time and then subside without treatment.”
The problem with Hemangioma is it could exist both on the outside as well as internally. Obviously you can’t see internally so having that eye hemangioma…what is there was something underneath too that is going to impact her vision?!
If it somewhere not complicated – somewhere non-critical – that can be covered by for example, hair, it’s not usually in need of treatment.
For our case, on the dang eye, we had to be extra careful. We went to multiple pediatric eye doctors to make sure she was able to see just fine. Luckily nothing seemed to be damaging her sight.
Medicine for Hemangiomas for Babies
- Beta-blockers (oral and topical)
- Corticosteroid medication
- Laser treatment
- Medicated gel
- Surgery
After all, was cleared with her weight, heart, digestion, and eye health – the Dr gave us the traditional treatment – a beta-blocker – oral propranolol.
Oral propranolol is the first line of defense for hemangiomas needing systemic treatments. The U.S. Food and Drug Administration (FDA) approved hemangeol (oral propranolol hydrochloride) in 2014.
We were hoping it was enough to curb growth until it hit a peak and go down in size without intervention as most Hemangiomas tend to do naturally but we also did not want to risk her vision health just sitting on our hands and doing nothing.
Am I a Hippie Crunchy Granola Mom Against Medicine?
I assure you I’m not the classic granola mom stereotype. It’s a negative stereotype about overly health food obsessed moms. It’s another one that judges caring mothers…but I’ll leave that rant for another day! I don’t mean to say it in an offensive way or anything. I just simply don’t consider myself to be special in my diet. I grew up very poor so I had to eat whatever was cheap, laden with fake food, and instant (microwaveable.)
But giving my 3 month old baby a nasty tasting (minty flavored) oral injection medication 3 times a day with limited research on the long-term implications and a list of side effects?
Eeeeeeeeeeek, that didn’t make me feel ANY better at all. I’m NOT an anti-vaxxer and I typically don’t have problems taking medicine. But for my 3 month old tiny baby? I was hesitant.
So I asked the Dr, “ok what about the TOPICAL beta-blocker?” Smearing on a liquid/lotion twice a day is much easier than force feeding disgusting medicine to our baby three times a day.
But the doctor said – topical beta-blocker (Timolol) is only “believed to lighten Hemangiomas cosmetically. Not reduce the actual physical size and topography of the Hemangioma”
My husband and I agreed taking oral Propranolol is better than risking vision damage so we agreed to get our daughter on Propranolol.
Side Effects of Propranolol
But on propranolol…comes the unexpected problem…forcing an infant to take nasty medicine = feeding aversion. Her weight was always a concern and a feeding aversion was the last thing we needed in hindsight.
We knew this right away because our daughter (thank God) from Day 1 was an AMAZING night sleeper. She would sleep 6-8 hours at a time at night. She never had her days and nights flip-flopped. We would often have to wake her up to drink milk.
When we got on Propranolol, she started waking up screaming and crying randomly every hour! Which has NEVER, EVER happened before. It was SO unusual for her. Sleep disruption is a common side effect of Propranolol.
Reduce Dose of Propranolol
We spoke with the Dr to reduce dosage because the sleep disturbances and drop in food intake were hard to manage with the Hemangioma.
After 2 months of zero change to the Hemangioma on the reduced dose of propranolol, we decided to call it quits with permission from the Doctor.
1) Experimenting with a reduced dose, we didn’t notice any change in the Hemangioma. It wasn’t getting larger but it also wasn’t getting any smaller or lighter in color. Zero impact.
2) My daughter hated the medicine and we had to TRICK her in order to force feed the medicine.
3) Hemangioma could have hit peak size by the time she was 6 months old (<-awesomeness). Did reduce dosage do anything? Not sure, no one knows. The entire time, her Hemangioma was very close to hitting her eyeball…didn’t make full contact. It just stayed less than 1mm away. Talk about skirting danger.
Getting Baby on Topical Timolol Beta Blocker
I knew oral medication on such a young baby that didn’t like eating was going to be a bad combo. When propranolol impacted her sleeping and feeding (giving her feeding aversion) we had to pivot.
The only thing left to try was topical Timolol – hoping it will work even though it would be superficial – then wait until she’s 1 year old to have the laser removal session if we wanted to.
I was very HAPPY to get on Timolol and off Propranolol.
Topical Timolol:
These beta-blockers can be used for small, superficial hemangiomas. They may also have a role in treating smaller ulcerated hemangiomas. This medication is generally considered safe when used properly under the care of a healthcare provider.
I originally wanted to try Timolol because it was the LEAST invasive option. It’s a topical drop: odorless, colorless and you simply have to dab it on the area with a finger. Takes 2 seconds a day. SO SO EASY compared to the horrible way of administering Propranolol.
But the Dr talked me out of it. She advised based on evidence, topical Timaolol wouldn’t do much good because it’s topical. It doesn’t penetrate down enough in the skin to shrink the Hemangioma, etc.
OUR experience was different from that. We wish we tried Timolol from the get-go. Timolol topical solution did wonders for my daughter’s Hemangioma.
Timeline of Timolol Doing Its Magic on a Hemangioma
Even though we were told it was for superficial coloring, my husband and I noticed within 2 weeks DEFINITE physical topographical decrease/shrinkage of the Hemangioma. We were delighted.
- We noticed a difference of color in 3-4 days. From bright red to a slightly more muted red.
- It started fading more and more to a muted pink in 2 weeks.
- Before the end of the first month on Timaolol, the entire thing has also flattened.
- 2 months in, even more, fading and less detectable.
- 4 months in, you would have to REALLY look for it to see it, even in photos.
Pictures galore of our peppy, sweet, little half Asian (HAPA!) baby. She’s been through a lot! Do not use any images without permission please.
The hemangioma did not get smaller, it’s only our baby that got a lot bigger. She physically outgrew the Hemangioma enough for us to be out of the danger zone for hitting her eye. As you can see the hemangioma slowly sank under her waterline when it started on it.
It’s hard to see the hemangioma (hard to see her eyes in general)…but this is 2 months in treating with Timolol, not bad!
Everything since 7 months on has been roses. Hang in there mommas! NONE OF THIS IS EASY but you will get through it!!!!!
Facial Hemangioma Treatment, Before & After
She’s 1 year old now! 2020 was hell! #DumpsterFire2020 But 2021 is looking great and so is her barely noticeable hemangioma on Timolol.
Some days it looks a little more visible – very slightly raised – just a faint light pink line. Some days you can’t even tell anything was ever there!
I think it depends on her emotions and if she’s cried recently (more blood flow to the area making it more engorged.)
Our little 12 months old toddler 🙂 can you see the hemangioma? Not really huh! 😀
Takeaway on Hemangioma Treatment on the Eye
I wish we just started on Timolol first, see how exactly it would react with her. There need to be more studies done on these medicines. I think they way undersold the power of Timolol. The only con for us on Timolol was pricing. Timolol is very expensive! A small bottle of Timolol lasts a few months with a small rice grain size dosage twice a day. Each bottle cost us $160 out of pocket. Your insurance and factors vary. I do believe $160 is the full retail price. To us, it is a small price to pay after this entire horrible adventure of treating hemangioma and feeding aversion.
On oral propranolol…I wish the Dr. didn’t talk us out of it the first time. Dealing with feeding aversion was a lot more emotionally draining. More on that next time mommas!
Drop a comment below if you have any questions! I have our doctor and specialist on email, maybe they will take questions from me 🙂
