An Anniversary Story

      Infantile Hemangioma

My daughter was born with two small ruddy spots just below her nose. I assumed they were stork bites or some other temporary birthmark. Baby skin is a weird, weird thing – something I really didn’t know until I had one. Cradle cap, white bumps, pimples. The poor things are messier than teenagers… Anyways – over her first two weeks of life, they darkened and grew ever so slightly and I began to think they might not be so temporary.

Drats.

No parent is thrilled when their baby is born with a facial mark. I don’t care what line Mama might feed you; deep inside she is wishing the spot, lump, whatever it is away with all her heart. Did I think my newborn daughter was the most beautiful baby in the world – spots and all? Absolutely. Now at just over a year, she is the most lovely little pixie of a girl I’ve ever seen with a megawatt smile that makes strangers grin. Did I still want those spots to go away and never come back? Yes. Damn straight I did.

I wasn’t worried about my beautiful newborn daughter, safe in her daddy’s arms where no one would dare hurt her; I’d begun thinking of my seven-year-old daughter on the playground, wondering why a group of kids is asking her what happened to her lip. I then thought about my someday fourteen-year-old daughter. I worried about her as she looked in the mirror and hoped with all my heart that she would be happy with what she saw there.

Being a girl is hard. I didn’t want it to be harder and, unfortunately, no matter how sparkling the personality or brilliant the mind or even how pretty the person – sometimes people are just mean and young souls are easily crushed by cruel words. I scolded myself for my shallow thoughts and determined that I would nurture her to become so strong and confident, that those red spots would be her calling card rather than her hindrance.

Infantile Hemangioma

When she was 18 days old, one year ago today, I noticed that the small marks on the outside of her lip were just part of the birthmark. After a bath one day, while she was probably making sweet baby noises – a dark, purplish patch of skin peered out at me from the corner of her mouth. When I tugged back at her lip, I saw that the color continued on the inside of her lip and onto her gums. I knew exactly what the purple patch was right away. The word ballooned in my mind before settling into my gut like a brick.

Hemangioma.

A few have popped up in my family before, so I wasn’t unfamiliar with the sight. Not to mention that it is impossible to escape the medical sensationalism all over television these days. I’ve seen the poor babies with half of their heads covered, faces malformed around sad eyes. And this is, of course, immediately what crossed my mind – because I am a new mother and new mothers are excellent at panic although they are surprisingly good at hiding it so they can ‘Get Things Done.’ I contacted her general physician and received a referral to Children’s Mercy of Kansas City – but we had to wait for their call to schedule an appointment.

Baby Girl’s lip grew and quickly.

Over the next few days, as I impatiently waited, I did the worst thing a parent can ever do – I googled. Never, ever, EVER google. You will see images you can not unsee and no matter the symptoms the diagnosis is probably death. However, ever the realist, I do believe it is helpful to know what may happen – because when BG’s lip did begin ulcerate, or break down, I knew what was happening. Ulceration occurs in 10-15% of childhood hemangiomas, most often in the lip, chest and bum. It is painful and can leave scars.

Infantile Hemangioma

Elevate Mommy Panic to Code Red. No longer was I just worried about some beauty marks on her upper lip. I was worried about facial scarring, future surgeries, infection… With Mommy Panic engaged, so also began the repetitive phone calls to Children’s Mercy – to ‘Get Things Done.’ Thankfully, when I called the dermatology department and told them about the ulceration, the nurses scheduled an appointment for us within just a few days.

So began The Learning and The Process.

Infantile Hemangioma’s are essentially a collection of blood vessels. There are three different kinds – superficial, which occur on top of the skin; deep, which occur under the skin; and mixed, which are a combination of both. It was easy to tell that Baby Girl’s was mixed – the spots that were so easily seen a sign of superficial, which the purpling of her mouth indicated the deep tissue hemangioma hiding beneath. The cause of Infantile Hemangioma’s is still unknown. There seems to be no direct causation, although they are most common in Caucasian females. Most are harmless and remain untreated and will simply go away on their own within time. The difference settles in placement and size.

Baby’s Girl’s was in a terrible spot, rubbing against her bottle and pacifier – the friction of which I believe caused the ulceration. Once the ulceration happened, it was hard for it to heal because babies gotta eat…and eat…and eat. If left untreated, the hemangioma could grow to a size that would affect future eating, speech, teething or even breathing. Some parents choose not to do medical treatment and simply let nature take its course. We are not those parents and we chose immediate treatment for our daughter.

Infantile Hemangioma

Baby Girl was first started on a topical treatment of Timolol, a topical form of Propranolol (a drug I have been taking since I was eight or so for chronic migraines – which probably made this more comfortable.  Yay familiarity!)  Timolol is a beta blocker formulated into gel drops originally used to help with glaucoma. It causes blood vessels to tighten and shrink. We also had to dab her lip with an antibiotic to stave off any infection that might occur in the ulceration and help it to heal. She hated it…I’m sure it hurt and it hurt us to do it.

Since she was so tiny, this was all we could do in the beginning – especially as we were going out of the area for the holidays. Treatment for hemangiomas does come with side effects; side effects that might be mild in adults but severe with infants. If something were to happen, we needed to be close to her physician.

The ulceration improved but the hemangioma grew quickly.

Infantile Hemangioma

The day after Christmas we went immediately back to Children’s Mercy to start her on oral Propranolol.  We spent three hours in observation to make sure that the .010 ml dose did not affect her blood pressure, breathing, or heart rate. She would need to eat every six hours to maintain her blood sugar levels – which meant she couldn’t sleep through the night.  Yes, for as long as she was on the medication. So, yes – we had to wake her up to feed her. No, she couldn’t sleep through the night no matter how badly we wanted her to. Yes, I nearly lost my mind.

Finally, starting at around nine months, we were able to let her go eight hours without waking her. Sometimes she even sleeps that long… But even now at one year, we still have to wake her up before we go to bed to sneak in one final feeding. Weaning her off this nightly ritual will be hard…but I will rejoice in the day that I can let my baby sleep.

Infantile Hemangioma

 

Over the past year, the hemangioma has worsened and improved. In the beginning it’s growth seemed to slow before it ballooned in her fifth month and she was started on a corticosteroid Prednisolone. It was the combination of all three medications: Timolol, Propranolol, and Prednisolone that made a marked improvement. Between six and ten months, the drooping of her lip decreased and even the spots beneath her nose shrank and lightened. She got to go off of the Timolol and Prednisolone and her doses of Propanolol no longer increased with weight. The end of medication now seems to be in sight!  We are aiming to have her completely off of meds no later than eighteen months.  After that, Mother Nature will be the one in control of shrinking the rest of the hemangioma and lightening the spots and scars.

Now, I am not so naive to think that this was the worst thing to ever happen. I am so thankful that I have a healthy and happy little girl – and in fact thankful that the hemangioma was on her lip rather than elsewhere. The doctor is confident that any scarring will be minimal and thanks to successful treatment, she won’t need any sort of surgery to reshape her lip. But treating an infant with daily medication for any type of condition is taxing. You are on the constant watch for side effects, struggling to remember doses, hoping she will eat enough to take this dose, trying your best to cajole the last sip between unwilling lips.

One of my favorite sayings is: “It could be worse.” Terribly optimistic, I know. But, it is definitely how I gotten through this with the kid. She is screaming because she doesn’t want to take her medicine? “Be glad that she is well enough to scream at you. It could be worse.” You have to wake her up to feed her twice a night? “Enjoy the snuggles and be happy that you can lay her down in her own bed, rather than a hospital cot. It could be worse.”  There are so many parents who would rather have my situation than theirs and after going through this minor trial, I empathize with them wholeheartedly.  My baby is not truly sick and it has been difficult.  To have a truly sick baby must be the hardship of a lifetime.

I have grown to love my little girl’s spots. It will be weird to see them fade and perhaps even go away completely. Already her lip is almost to a normal size and when she smiles the drooping disappears entirely. It makes me so happy to hear people compliment BG on her smile. I desperately hope that others realize how much those words mean and that those compliments continue all of her life – and that she never decides to hide her brilliant smile because it might be different.

Infantile Hemangioma

 Note:  To any parents who have stumbled across this looking for information about infantile hemangiomas – please feel free to contact me!  I would love to try to answer any question you might have.  I am not a doctor.  I am just a mom who has had the experience of going through this with her baby.  I can offer advice and support!  Because no matter the size, this can be scary.  And I understand.

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