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September 30, 2009

As a parent, my biggest pet peeve is when people ask me "what is wrong with my little boy?" or "I'm so sorry that your little boy is ill".  I understand that baby gender can be difficult to figure out, but usually pink frilly dresses tell their own story.  The assumption of illness is a bit more annoying.  I'll never understand why some people think it is appropriate to literally run after a total stranger (one man was so upset that for a second I thought that something was actually wrong with Elizabeth), to point and stare ("aww... look at the sick little baby", said a mom to her kid) or to ask in a hushed tone of voice if anything can be done.  I feel great empathy for children who are actually sick because it must be heartbreaking to be trying to live a normal life and be continuously reminded of the sickness by ignorant clods with foot-in-mouth disease.

 

Our pediatrician had referred us to a specialist to to have her hemangiomas or strawberry patches checked out, and we'd spent the last five months waiting for an appointment.  Several weeks ago they called with a date in January, which was then bumped to today ("I don't want to alarm you, but our appointments are triaged by the surgeons and they would like to see Elizabeth sooner rather than later", said the receptionist)

 

So Elizabeth visited CHEO today.  Most of her birthmarks appeared when Elizabeth was a few weeks old.  She has eleven or twelve that are visible - four on her head (or five, if you count the one on her nose as two), three on her torso, one on her hand, one on her thigh, one on her bum and one on her toe.  The ones on her hand and toe were present from birth, but the others appeared gradually after a few weeks.  Hemangiomas usually grow for the first six months, and then start to disappear.  Most disappear entirely.

 

Five hours and three clinics later (plastic surgery, dermatology and the blood lab) we had one tired, hungry and slightly cranky girl.  That would be me - Elizabeth is a good baby!  Although not too keen on sitting around without clothes on for hours while strangers looked up her nose with a flashlight, Elizabeth behaved extremely well.  We won't talk about the attempt to pee on the dermatology resident.  Even the vampires that took four vials of blood got a smile, though she definitely didn't enjoy that part.  At least Brendan and I think it was four vials.  I cowered in the corner as is my wont while Daddy focussed on holding down baby and not passing out. 

 

The plastic surgeon (Dr. Duncan) was very interesting.  She commented that ten years ago all hemangiomas like Elizabeth's would be simply monitored until adolescence.  Now, they might try to take them out at the early stage (back when they looked like small scratches).  They are still figuring out how best to treat them.  As her pediatrician had already said, surgery too early can leave scars that will grow with the child.  Dr. Duncan believes that Elizabeth should be monitored but that we probably won't need to do anything right away.  She suggested that we may want to do something about the ones on the side of the nose before Elizabeth starts pre-school, as children can be very cruel.  Food for thought.  She then walked us over to the Dermatology clinic for our next appointment.  They do these appointments together because a direct referral to dermatology has a waiting list of at least a year!  We were quite impressed with how smoothly the two groups work together.

 

We met a number of other parents and babies with hemangiomas in the waiting room for the dermatology clinic.  Most of the other babies only had one or two hemangiomas but these had grown so rapidly and to such sizes that they caused big problems.  One little girl lost the hearing in her ear.  Another was unable to close her mouth.  Both are now doing much better after several rounds of medications.  We're pretty thankful that Elizabeth's seem to be mostly cosmetic.  The blood tests were ordered to check that they aren't causing thyroid or heart problems, as apparently the extra blood vessels can cause the heart to work too hard.  We'll be getting an ultrasound to rule out hemangiomas in the liver next week and then I guess we'll find out what next at a follow up appointment two weeks from now.  For now it sounds like they expect to be simply monitoring the hemangiomas since they seem to have stabilized in size.

 

I was most surprised by the apparent lack of baby facilities at the children's hospital.  "Where's the washroom?" I asked one employee.  Perhaps she didn't notice Elizabeth, but she directed me just inside the neonatal unit where I discovered a pedestal sink, a toilet, and no other facilities suitable to changing a diaper.   Downstairs we discovered a pair of washrooms with the baby changing sign prominently displayed. One was intended for fathers, and the other for mothers.  The "change table" consisted of a longer sink counter covered in soap and water.  Elizabeth isn't fond of strange toilets and is particularly suspicious of public toilets due to the gap at the front.  These may be designed for ease of cleaning, but they are not that compatible with natural infant hygiene! 


1
On October 15, 2009 at 00:32 am
Stephanie said:
Look how sweet her smile is in that photo! She is all girl, for sure.

It always flabbergasts me when someone asks me if my baby is a boy or girl - especially, as you said, if she is wearing bright pink or purple. That's such a strange phenomenon. I suppose people are just unobservant...or colorblind.

Elizabeth sounds like she was an absolute champ through all of those tests. She sounds so lovable and lively.

P.S. Don't you just hate that our culture is so obsessive about looks? Our littlest was born with a "stork's bite" on her nose and forehead. When we went in for her first appointment with our pediatrician, he mentioned plastic surgery in the future. She was only a few weeks old!!!
2
On February 9, 2010 at 08:39 am
Gena said:
No, SERIOUSLY, people are so very rude. I mean, kids can be rude too but adults have no excuse!

People ALWAYS make comments about E's hemangioma. They always say the same thing "Awwww, what happened to her nose?" and I'm like "Awww, what happened to your MANNERS!" I don't ask about your sex life so please don't ask pointed questions about my child's medical history.

I'm teaching E that when you see something "different" about someone, you either find a way to say it's pretty or find something else that makes them pretty.

When I get a free moment, I will send you a quick email too, in answer to your comment on my blog. Hopefully when E goes down for a nap :)
3
On February 9, 2010 at 08:55 am
Gena said:
Oh wait... I need your email LOL

I can't find it anywhere :)
4
On February 19, 2010 at 12:32 pm
Sarah @ BecomingSarah.com said:
ARE YOU SERIOUS?!

People astound me, they really do. Your Elizabeth is lovely just as she is, and I think it's a shame that other people don't tell her that just as they do other children. Moreover, seriously, PINK and FRILLY. Sigh.

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