Hit by a Pitch

The Worst Week and a Half of my Life

with 32 comments

What do you wear on a day you might find out your baby has a serious health problem (something that starts with a “c” and ends with, well, you know)?

I went with the usual “I don’t really care” outfit, which for me consists of Victoria’s Secret “pink” sweatpants (I know, fashion police, hunt me down, spray me with mace, swear at me, make me get down on the ground, put me in your SUV, offer me a cigarette, and drive me off to jail while referring to me as “brah”), a t-shirt from Urban Outfitters that says “St. Tropez” on it, Converse All Star low tops, a Ben Sherman athletic jacket, and my default glasses. If I’m going to sit around all day waiting to get either very good or mindblowingly bad news, I at least want to be comfortable. Lipstick but no eye makeup.

A couple weeks ago, I noticed that, in dim lighting, Soren’s pupils are not the same size. At first I thought I was imagining it, but after a few days, I realized that I wasn’t. I googled the hell out of this and learned a few things: it could be nothing worse than looking a little bit like David Bowie (anisocoria, when your pupils are just different sizes and there’s no bad reason for it) or it could be something really bad (tumor, cancer). I figured that, because he didn’t have any other symptoms, it was probably just anisocoria.

We went to the pediatrician to have it checked out, and the PA thought it was probably nothing (and couldn’t even notice it in the bright light of the exam room) but recommended that we have Soren checked out by a pediatric ophthalmologist just to be safe. So last Thursday, B took Soren to the appointment. (I didn’t go. We didn’t think it was going to be a big thing.)

The phone call I got from B was not good. I was at the gym. I sat in the locker room and sort of participated in a conversation that included phrases like “the bad news,” “the really bad news,” “Horner’s syndrome,” “MRI,” and “tumor.” I didn’t really hear much after “MRI” and “tumor” to be honest. There also was something about not being able to schedule the MRI until we got approval from the insurance company.

I’d kind of like to go off on a tangent here about how thankful I am that Soren has decent health insurance and how it’s a travesty that anybody in this country could face what we just faced, or any potential health crisis, without adequate insurance coverage. But I won’t, because I already have too much to say.

Everybody says not to google this kind of thing, but you know that’s pretty much all I did for days. According to the eye doctor, Soren most likely has congenital Horner’s syndrome (sometimes referred to as Horner syndrome). HS generally has the following symptoms: unequal pupils, a droopy eyelid, and a lack of sweat and/or flushing on one side of the face. It’s caused by a disruption/damage to the nerves that travel from the brain to the eye (which, I didn’t know, go from the brain down through the neck to the chest and back up to the eye). HS is rare and can be present at birth for no apparent reason or it can be caused by an injury or tumor. The tumors are the really scary thing, and we had to take Soren for an MRI of his head, neck, and chest to rule out a tumor (according to the doctor’s notes, we had to rule out neuroblastoma and gliomas, but there also are other tumors associated with HS; I am very glad I didn’t google “glioma” before the MRI).

Anyway, I’m not sure if he said “most likely congenital Horner’s syndrome” because it’s most likely congenital or it’s most likely HS. Soren has only one of the symptoms (anisocoria). We’ve been obsessing over his eyelid since we found this out, and it doesn’t appear to be droopy at all, and his whole face flushes when he gets mad.

Thankfully, we got insurance approval the next day and had the MRI scheduled for this past Monday, 11 days after finding out we needed it. As far as I can tell, that’s very speedy MRI scheduling, for which we’re very thankful. Of course, that doesn’t mean those 11 days weren’t filled with an awful kind of terror I hope to never experience again. Every part of my brain was filled with terrible thoughts during those 11 days. What if this? What if that? I’m not even going to tell you what I was thinking, because some of it is too awful to even put into words and set free into the world. Even saying it has to be bad karma, and I’m all about karma right now. I’m not even bitchy any more, partly because it’s the right thing to do and partly because I am not willing to suffer the consequences of anything I do wrong. I’m sure you can imagine, anyway. What if the worst possible thing happens? What happens after that? What do we do? How do we survive? How could the universe be so cruel? The universe can’t be so cruel. Oh yes, it can.

It got a little easier after Wednesday, when I talked to some cool people who know about these things who said that, if they thought something was really wrong, they would’ve gotten us an MRI right away. This made it easier for me to tell myself that everything would be okay and believe it at least part of the time. Thinking about this got me through the next few days without being in a constant state of panic, which was a big improvement.

Children’s Hospital has a nice, shiny, new campus out in Aurora. The drive out there was fine. On the way, I tried to avoid searching for meaning where it doesn’t exist, in the color of the sky or the traffic or the way the trees look and whether these things could happen in a world where we’re about to get very bad news. Of course, the world is neutral. The trees don’t care what happens to us. This is almost comforting. We’re all insignificant. (Isn’t this something the guy from Zen and the Art of Motorcycle Maintenance would say? That the only zen you have at Children’s Hospital is the zen you bring there? Oh wait, didn’t his son die?)

I was so anxious as we entered the building I felt like I was on autopilot, like I could walk and sort of function but anything that required thought would’ve been impossible. Weirdly, one thing that helped was some of the cool artwork they have around there. It provides a really good distraction, especially the bunny sculptures (big giant ears, look like our min pin) outside the main entrance and the big thing with dogs and balls on tracks that makes noise outside radiology. I’m sure the people who design hospitals do this on purpose, and I really appreciated it. The crazy carpet in the radiology waiting area helped, too. You can kind of get lost in it.

While we were waiting, we saw kids with what appeared to be serious health issues. I realized that we might become people with a kid with a serious health issue. (I mean, the big C is about as serious as it gets, right?) I didn’t want that to happen to us. You think about bad things when you’re standing in the lobby, watching the elevators go up and down. You think about this being your baby’s first trip to the hospital (he wasn’t even born in a hospital; we’re not hospital people). Bad things happen in hospitals. You get bad news. People die. Any of these things could happen to us. The fact that they happen to anybody is tragic. You don’t want it to be you but you don’t want it to be them, either. You feel helpless and more scared than you’ve ever been in your life.

I finally know what it means to want to give my life for someone else. I’d rather have a million health problems than for him to have one.

We went from one waiting room to another, where one of the radiology peeps (nurse? tech?) explained the general anesthesia and listened to Soren’s heart and lungs (thankfully, she didn’t think he was too congested, which we’d feared — that would mean we’d have to reschedule and prolong the terrible waiting). Then we went to Soren’s little private room, where we’d wait and where he’d recover. By that time, he was very upset because he couldn’t have milk after 9 a.m. and was starving (the MRI was scheduled for 1:00). We tried to distract him with ESPN on the tv, singing, bouncing, the usual baby stuff. Sometimes it worked and sometimes it didn’t. By the time the anesthesiologist came in, Soren was screaming. I was lightheaded. Something about “minimizing the risks.” I tried to pay attention and understand everything even though I didn’t want to think about what I was trying to understand.

With such little babies, they don’t let you be in the room when they go under. I think this is good because we were already such a mess we didn’t want to see it. They took him at around 1:05 and gave us one of those pagers like you get in a chain restaurant that tell you when your table is ready. We went to the hospital cafeteria to eat (one thing I’ll give lactating credit for — it lets you be hungry and eat even when you’re too stressed to eat). The pizza probably wasn’t really wood fired, but it wasn’t bad. I drank a Coke and ate every ice cube from the cup, a habit I acquired while pregnant (on the very rare occasions I have a fountain Coke). Every day for almost the past year I’ve had you with me and I love you more than anything in the entire world. This can’t go wrong now.

During lunch, I took the pager out of my bag, put it on the table, and glared at it. I was terrified of it going off soon. The MRIs were supposed to take at least two-plus hours. If we get paged before that, it means something went terribly wrong.

After lunch, we ended up in the hospital’s library, looking for a book on Horner’s syndrome (there wasn’t one). We couldn’t find anything about eyes or neurology. Then the pager went off. It was just over an hour since we left.

Holy fuck.

We just about run across the lobby to radiology. I put my luggage (overstuffed handbag, breast pump) on a table and have a panic attack. What happened?

A woman comes out and asks if we’re Soren’s parents. She seems happy. I’m a parent? Everything’s fine. He’s done. He’s waking up. I almost trust the universe again.

We’re reunited with a very groggy baby who has an IV needle taped to his hand. The poor kid is wearing a tiny hospital gown covered with bears in space and no socks (we always dress him in footed sleepers and I didn’t think to bring socks).

The recovery process isn’t bad. Soren has a bottle and we hold him so he can’t scratch himself with the IV getup and so he can inhale a little oxygen when the pulse ox (is that even right?) thing starts beeping. Everybody is very nice. They seem like there isn’t bad news about to fall out of the sky and crush us.

After Soren is ready to go and I’ve fulfilled my pumping duties, we head out and B suggests stopping by the eye clinic. I had emailed the doctor on Friday, letting him know that we would be getting the MRI on Monday and asking when we could expect the results. He got back to me right away and said Monday or Tuesday; he couldn’t guarantee Monday because he’d be on city-wide call and might be at another hospital. It turned out that he was in. He’d be out to see us between patients, when he had a chance.

We sat in an incredibly sunny waiting area, with Soren asleep in the stroller. It didn’t seem like we were about to get very bad news. It just didn’t. But you never know. After about 10 minutes, the ophthalmologist, a true type-A kind of guy who shakes your hand, tells you what’s what, and then disappears as quickly as he arrived, came out to talk to us. The MRI revealed that Soren has a cold (paranasal sinus disease is what the report said, trying to make it as ominous as possible). Everything bad is fine. Or something like that.

No tumor. No cancer. No end of the world.

I know I’m probably being over-dramatic and ridiculous about this. My kid is fine. It’s not like we were all buried under rubble in Haiti. But this shit really freaked me out.

I’d like to tell you that this experience fundamentally changed me as a person. I think it did. But telling you that right now means nothing. It only means something when I do all the things that I’m going to do and all the things that are going to be different are different. In a way, this was the worst thing I’ve ever experienced but now that it’s over, maybe one of the best things to ever happen to me. Now I know I can be a better mom than I ever imagined. And that’s really fucking awesome.

Update: Almost a year later, Soren is awesome. His Horner’s syndrome symptoms haven’t gotten any worse (the doctor said they wouldn’t get worse) and his eyes have both changed color a bit (from blue to more gray with some hints of green). His right pupil is still larger than the left pupil, but other than that, he looks perfectly normal. If you’re dealing with a baby who has Horner’s syndrome (also known as Horner syndrome but I’m defaulting to the ‘s version now because it seems to be more popular) and are freaked out about it, feel free to comment here or email me. The waiting before the MRI was so hard for us, and it made me feel a lot better to talk about it (even though I didn’t know anyone who had been through the same thing). In all my obsessive googling, I found that, more often than not, babies with Horner’s syndrome end up maybe looking a little different but otherwise being totally fine. It’s one of those things you have to get checked out and it’s terrifying, but chances are your kid will be fine just like Soren.

I like the idea of us all sticking together. Horner’s syndrome is so rare and there aren’t very many of us who have had to deal with it.

Written by Tracy

February 5th, 2010 at 10:13 pm

32 Responses to 'The Worst Week and a Half of my Life'

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  1. ugh – wish you didn’t have to go through this…but I’m glad you wrote about it.

    talesofmy30s

    5 Feb 10 at 10:23 pm

  2. My son has horners syndrome. I went through every single emotion you did. So how old is he? Does his eye still not dialate the way that it should?

    Shannon

    15 Apr 10 at 10:41 pm

  3. I would love to talk. I would love some support. My son had his MRI done in january for the same thing

    Shannon

    15 Apr 10 at 10:43 pm

  4. Hi Shannon!

    Soren still has one pupil that’s bigger than the other — I’m always getting confused, but I think the affected pupil is the smaller one, which for him is on the left side. He’ll be 6 months old on 4/25.

    How’s your son doing?

    Tracy

    17 Apr 10 at 8:16 pm

  5. He is good. Thanks. I just read your story and I felt like I wrote it. The emotions I went through are unbeleivable. My son is like yours, living a normal happy life. He just has two different sized pupils. My son’s smaller eye is the one that is affected. I just wonder what he will go through growing up.

    shannon

    19 Apr 10 at 4:57 pm

  6. [...] lady, it was farts) and there’s always the worry about autism and delays and brain tumors (and hey, that one turned out to be a legit worry). Well, maybe there aren’t always the worries, but there were for me, in the early days, [...]

  7. I went through this a couple of months ago. My son has a wandering eye which is why I was paying attention to his eyes. He also has ptosis and the smaller pupil. Scariest thing my husband and I have gone through. Dean Thomas is one and they put him in the hospital to do the MRI and CT scan and get a 24 hour urine analysis. It all happened really fast which were thankful for. But, I don’t think we have fully gotten over the shock! They will be testing him every couple of months for cancer. Not fun!!!! He is doing really well though!

    amandabmorrow

    21 Mar 11 at 7:07 am

  8. [...] he didn’t eat food yet anyway). It wasn’t my favorite time ever, because we were in the middle of intense worry about whether Soren had a serious health problem. (He [...]

  9. I think my daughter also has Horner’s. We noticed her pupil didn’t dialate in the dim light when she was about 3 weeks old. At that time there were no other symptoms, but for the past month i have noticed her eyelid drooping a bit. We told our PA as soon as we noticed it and she has referred her to a paediatric opthamologist but our appointment isn’t until November and i don’t think a day has gone by i haven’t obsessively searched google and cried myself to sleep. I just can’t take it anymore. I also have an older boy with severe brain damage from a complicated delivery and he has numberous health problems which make him extremely fragile. I just don’t think i can handle anything else. I know my daughter’s “horner’s” isn’t caused from any kind of trama as she was a c-section and everything has been fine. She’s is growing and developing beautifully. Does anyone think it would be worth it to push for the urine test that can detect tumors while we are waiting to see the opthamologist? Just can’t take not knowing and worrying anymore.

    Jodie

    12 Sep 11 at 9:03 pm

  10. Jodie, I don’t know! We never had a urine test. If it would make you feel better, it seems like an easy enough thing to do, so you might as well see if you can get one.

    If it makes you feel better (and believe me, I know how stressful the waiting is), I’ve read so much on the internet that says Horner’s syndrome in infants is almost always congenital. Of course you have to rule out the scary stuff, but it’s so unlikely. Your daughter is most likely going to be totally fine.

    Please come back and let me know how your appointment with the ophthalmologist goes. I’m thinking tons of good thought for you and your family!

    Tracy

    13 Sep 11 at 9:52 pm

  11. Hu there- how can I emai you, may I have your email address? It’s regarding HS

    Tiff

    14 Jun 12 at 12:01 pm

  12. Tiff, you can email me at fanmail at hitbyapitch.com.

    Tracy

    17 Jun 12 at 7:23 am

  13. Thank you, I just sent it

    Tiff

    25 Jun 12 at 1:08 pm

  14. Hi, i came across this while searching google for info on babys with horners syndrome! My daughter is 4 months old now but since the very first time she opend her eyes i noticed one of her pupils was larger than the other, over the next few days i realised one was not dilating in sync with the other but only in dim light. I took her to the docs right away who referd her to the opthamologist. Ive waited 12 wks for my app witch is on the 10th of july! Everything about this points to horners, her eye is drooping alot now :( i just dont know what to do, i am terrified something bad is going to happen to her. My first daughter died from SIDS my second daughter contracted bacterial meningitis & septicemia now my 3rd precious girl has this! After the opthamologis app how long b4 they can tell whats causig this? How long b4 MRI ect? I dont think i can stand another night worring if my baby is going to die or not im a walking zombie terrified to let her out my sight. Her birth was ok apart from being very quick, she had to be turned from back to front manually just b4 she came out & i had hemmoraged straight away, might this be why? Please help im worried sick. Its 4am lol i cannot sleep for this. Thanks xx

    julia

    27 Jun 12 at 9:46 pm

  15. Justs found this site while looking for info on Horner’s. My son has one eye that doesn’t dialate and saw an eye dr this morning.. they suggested using cocaine eye drops to test the eyes or doin an MRI. not crazy about either. Have you heard of these eye drops and what the side effects may be? he is 9 months old.

    Rachel

    9 Aug 12 at 1:40 pm

  16. My son was diagnosed with Horners Syndrome when he was 3 months old. One day I noticed his pupils were unequal and his lid was drooping slightly. I went through the same emotions. The wait to get the MRI done was terrible. Luckily we waited in the hospital until his preliminary results came back. They were negative as well. He is now having his one year follow up MRI. After this, they said unless something changes he wouldn’t have to have another. I know this is just precautionary, but those same emotions are coming back and I just am so anxious to be done with it. He is 17 months old now and his Horners isn’t any worse according to the eye dr.

    Brandy

    28 Aug 12 at 11:38 pm

  17. We are seeing the Dr. tomorrow. My son, age 10, has autism and has had 2 episodes of spasmotic torticollis at age 5! We aren’t going for tests yet we are just going to see the neuro opthomologist. I have been very angry. I noticed after going through his medical records that a neurologist he saw when he was 3 because he had 3 days of fever siezures saw partial horner’s syndrome. We were never even told this was a big deal – my son’s eeg came back normal and that was that. After going faithfully to the eye dr. since my son was 5, the eye dr. now see’s signs of horner’s syndrome. I have tried to remain optomistic since it has to do w/ the nervous system and being that my son has things like autism and has had torticollis. My only concern is all I hear of are the babies. I have yet to hear of a 10yr old going to the dr. for this.

    J Cope

    10 Sep 12 at 5:32 pm

  18. I’m so happy your baby was okay…I’m hoping for the same for mine. They are giving him a urine test to look for elevated levels which would suggest a tumor but after reading this I’m wondering why they wouldn’t give him an mri?!

    lexy

    13 Sep 12 at 6:48 pm

  19. So happy your baby is okay. I’m in the same situation, my 7 month has Horners and we are going in for an MRI in two days. I am worried and scared but it’s nice to read a story that turned out okay! We have noticed the pupil since birth but just noticed slight drooping of his eyelid, that worried our Dr. so she scheduled the MRI, totally freaking me out!!

    Aimee

    22 Sep 12 at 6:44 pm

  20. Thank you for sharing your story. We just found out yesterday that our 5 month old daughter has Horner’s Syndrome but the doctor wants to do an additional test with eye drops before considering any imaging scans. Our daughter had a traumatic birth and my research is showing that her birth experience could be the cause but of course I am beside myself with worry that it could be something more serious :-(

    Tanya

    12 Oct 12 at 2:47 pm

  21. Just to update about my son and his Horner’s Syndrome. The diagnosis is idiopathic. Meaning there is no known cause. His is not congenital. He did not have a traumatic birth either. He has had two sets of MRIs done (one at 3 months and the other at 17 months) of the head, neck, and chest. Those were both negate. They did initial urine tests at 3 months and they were negative as well. At this point, he requires only yearly eye exams for the Horner’s, unless other symptoms would arise. It was a scary situation and I can’t imagine what parents go through when they don’t get the great news we did. I feel extremely blessed my son is OK because I realize not every parent hears the same. Good luck to anyone dealing with this situation. It is a terrible feeling having to wait to hear what is wrong with your baby. I wish everyone the best.

    Brandy

    13 Nov 12 at 10:01 pm

  22. Brandy, thanks for the update and glad to hear all is well with your son!

    Tracy

    14 Nov 12 at 12:29 pm

  23. Sorry you had to go through that i’m happy he is doing well.

    When my daughter Makayla was born in 2008 they handed her to me for the first time and as i held her in my arms i knew there was something wrong with her eyes, her right eye was completely closed, i asked the nurses what was wrong with her and they said it was just probably from when she made her way down the birth canal but i knew something wasn’t quite right.. Over the next couple of weeks her right eye was still closed, it only would open a small amount, even with that small amount i noticed her right eye color was green but cloudy but her left eye was brown, also her right pupil wouldnt dialate at all, she aslo would only go red or sweat on the left side of her face the right side just didn’t respond. I was given an appointment for her eyes and i was told that my baby girl was blind, my world came crashing down, i just kept thinking how my baby would never see the world or me and her brother. As the weeks went by my daughter would look at me and i kept thinking ‘she can’t be blind she’s looking at me’ and this went on for weeks i knew i wasn’t imagining it cuz she was definatley looking at me i started to realise my doctor was wrong BUT what was wrong with her. I was sent to the hospital with her and after she was given cocaine drops to force dialation on both eyes and ran a few tests on her they had an answer for me ‘Horners Sydrome’ like you i was told not to google it but as soon as i got home i fired up the computer and with in minutes i had read up loads about HS. Since being diagnosed her eye has opened up with only a slight droop, the color is now brown but still cloudy, she still doesn’t sweat or go red on the right side. Makayla is now 4 and has started school, i’m so proud of her, she has check ups every 6 months to make sure she is coming along well, a year ago she couldn’t see 3D but har last appointment i was told her vision is now 20/20. She does ask me why when she looks in the mirror her eye is small so i just tell her its her special eye. I’m happy i came across your story and to read there is someone else out there who has been through quite similar. Thank you for sharing. :)

    Please feel free to email me or you can find me on facebook: Joni Riley

    Joni Riley

    22 Jan 13 at 5:23 am

  24. My 3 month old son was just diagnosed with Horners as well and I’ve never been more frightened. We go for our MRI in a few weeks and I’m dreading it. It helps to see your post and know that everything can be okay! I pray my little one gets good news. He has a smaller pupil and the droopy eye. I’ve never been more terrified.
    Thanks for posting. This gives me hope.

    Rebecca Kubin

    9 Feb 13 at 8:58 pm

  25. Noticed about a month ago that my now 5 month old daughters pupils are different sizes. I thought I was imagining it and mentioned it to my mother who said I was probably looking at them when one was getting more light thn the other. Definately not the case. I asked a friend who noticed it as well. I was hoping it would correct itself but of course hasn’t. I googled it…fearing what I would find. I am going to call her Dr in the morning. Very nervous…hoping it is nothing!!

    magee

    10 Feb 13 at 11:29 am

  26. I noticed my baby had a smaller eye when he was 1 week old. He is now 8 months old and his neurologist has determined that he does in fact have Horner’s Syndrome. and tomorrow I will be calling Children’s Methodist Hospital to set up an MRI as requested by my son’s neurologist. I am so scared about my son going through with this. I just pray for the best…thank’s for sharing your story.

    allison de la garza

    7 Mar 13 at 8:30 pm

  27. Thank you for your story! My daughter was diagnosed with HS and is scheduled to have her MRI and just like you were I am terrified! I hope all turns out well please keep us in your thoughts! Thank you again for your story!

    Nikki

    21 Mar 13 at 3:47 pm

  28. Keeping you in my thoughts! Hope all is well!

    Tracy

    21 Mar 13 at 6:59 pm

  29. I know this posting is old but i.wanted to see if your still there?

    Meilin

    25 Apr 13 at 4:00 am

  30. Hi everyone. How are your kids doing?Any news on results? I’m waiting on bloodwork for my 6 month old to determi whether or not there is a tumor.

    Meilin

    25 Apr 13 at 4:08 am

  31. My son’s MRI came back negative! Neurologist says he may have some aesthetic things happen (different color eye and permanent ptosis) but we are fine with that. I learned congenial horners is most likely not a tumor so try not to worry! I know it’s hard, but I’m sure everything will be fine.

    Rebecca Kubin

    25 Apr 13 at 1:01 pm

  32. Thank you so much for posting this, it helped to calm me down. I took my almost 4 year old son to a pediatric opthemologist today upon the direction of his pediatrician because hes right pupil is very much smaller than his left and he was diagnosed with ptosis as an infant. During the visit, the opthemologist asked if my son sweat on one side of his face more than the other… I had noticed his left side always sweats when he sleeps but I hadn’t notice his right side didn’t until the doctor asked. He proceeded to tell me my son has Horner’s Syndrome and started to rattle off causes… congenital, injury, and tumor are the 3 that stood out.
    He was born with the ptosis so congenital is most logical but, like you, I heard the word tumor in regards to the center of my universe and overall reason for existence and my world went dark. I have been obsessively googling for hours just trying to understand what could be going on with my son and I came across your article. It’s like you were talking directly to me… like you were in my head. Once I got to the end, I felt reassured that someone else has been in my shoes. We will be scheduling the MRI soon and I know I will be in same condition as you were but I feel better about the outcome now that I have read of your experience.

    Thank you, from one concerned mother to another.

    Sincerely,

    Heather

    Heather

    13 May 13 at 10:28 pm

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