My Son's Brachial Cleft Fistula

This was originally written on Monday, June 23, 2008:

June 18th was Logan's two month birthday and also his two month pediatrician's appointment. When Joe came home from work to go with me, I said, "I have bad memories from the last time we were there and we kept having to go to the hospital for his jaundice. Hopefully this trip will be more positive." We had no reason to think otherwise--Logan's been thriving and doing excellent. Weeks 2 thru 8.5 were the best weeks of my entire life! Now, of course, I've come down from my high.

The appointment started off well. Logan was weighed and measured, ending up in the 90th percentile when it came to his weight (13 lbs, 6.5 oz!!!) and 55% when it came to his height (23 inches) and 45% when it came to his head (15.5 inches). All of the nurses said he was pretty solid--he has a lot of muscle--and after the PA checked his heart, lungs, eyes, nose, ears, mouth, etc. she said that everything looked really healthy.

Then our pediatrician came in the room and did a more thorough check of everything. I noticed that he kept focusing on Logan's neck. Joe & I both thought maybe we hadn't cleaned it well enough, haha. But the doctor pointed to a dimple on Logan that Joe's mom had first shown me when I was in the hospital after giving birth. During Logan's first couple of days of life I really didn't inspect his body. He was just so fragile-looking that I was scared to touch him much! In fact, I didn't even kiss him until day 3. After his jaundice experience, though, I realized that babies aren't as fragile as they first appear, and so since then he's had kisses galore! :-) Needless to say, that's why it was my mother-in-law who first pointed out the pit on his neck. I had been holding Logan in my hospital bed and she said she'd looked for unique features and the only thing she'd found was a tiny little dimple. The way she said it sounded concerning (she might have even used the word "hole"), but I assumed that if it was anything serious a doctor or nurse would have said something--so I just brushed it off.

For the past two months I've seen it, my parents have seen it, Joe has seen it, etc.--and none of us thought it looked like anything that needed special attention. So when our doctor focused on it, I was surprised. Joe and I moved closer to him and were shocked when he said, "Do you see this hole? It's a brachical cleft." Obviously that went right over my head, but he continued, "Do you see how there's fluid around it? That's not supposed to be there."

Sure enough, the area inside the dimple was wet. I knew right then that this appointment was not going to be any better than our last. The pediatrician explained that at first he'd thought maybe the wetness was caused by one of Logan's tears (Logan was crying at the time) but every time he wiped it away it reappeared. We had never noticed the area getting wet before, probably because the liquid never dripped down--it was the smallest amount you can imagine.

The doctor said that as our heads and necks develop they fuse together like a zipper down the middle. A brachial cleft occurs when it doesn't finish at the end and leaves a hole above the collarbone. Sometimes this happens and it's just something to keep an eye on, but when there's fluid leaking it's serious because that is a sign that it's only a matter of time before infection will occur. He said that unfortunately Logan is going to need surgery to fuse the area together and so we needed to call his plastic surgeon as soon as possible to meet with him within the week.

Of course tears started to form in my eyes, which must have been what the doctor had expected because he talked directly to Joe and didn't look at me at all until the very end, when he was very sympathetic and gave me a box of Kleenex. He also wrote down the name of Logan's condition since I was speechless at that moment and didn't know what questions to ask.

I couldn't believe this was happening--surgery on my two month old baby? Did this mean he wasn't going to be "normal?" I thought about a little girl who had been in the waiting room before our appt--she was deformed and I couldn't help but worry Logan's neck now would be. A million depressing thoughts ran through my mind as the doctor left and the nurse came in with vaccinations. For those of you who read my pregnancy blogs, you know the vaccines had originally been the part of the appt. I'd been dreading.

During my all-day sickness period I watched a lot of television and read several magazines, and there was a lot of stuff about vaccinations and their link to autism (esp. in boys), ADD, hyperactivity, other brain disorders, and immune disorders (why children get sick more now than when my generation was growing up). At first I didn't want to hear or read about it (my mom was actually the first to bring it to my attention a couple of years ago when it all first came out, but the controversy was too complicated to think about when I wasn't even planning to get pregnant at that time). I had hoped that by the time I had a baby I could just trust the American Academy of Pediatrics because there wasn't an easy answer for me to make on my own, and I didn't want to make the wrong decision.

Unfortunately, the evidence is coming out at an extremely slow pace since the studies are basically on an individual basis (why are some children affected and others aren't?), and so in the meantime the American Academy of Pediatrics is still giving out the vaccinations because otherwise the alternative is an outbreak of the diseases.

But, after doing my own research, I couldn't ignore the facts. I'd never forgive myself if my son was negatively affected by the vaccinations since now I knew better. At the same time, I'd never forgive myself if Logan ended up with a deadly disease. Therefore, Joe & I didn't want to NOT vaccinate AT ALL, but rather compromise so that we can know we did the best we could if either scenerio happened.

Just like how I chose my birthing hospital (the one that does the most births in my city, as well as the one most medical personnel choose to have their own babies in), it was important to me when I was finding a pediatrician to select one that was knowledgeable about both sides of the vaccination controversy. There are a lot of biases BOTH ways (half of the pediatricians here will not allow parents to choose their own vaccination schedule, while there are holistic doctors who don't encourage parents to give any vaccines at all). I wanted someone who was open-minded and would tell me the truth of both sides.

Fortunately, my actual pediatrician specializes in autism and so he knows that many of his patients' parents are adament that the vaccinations were to blame (because their babies were perfectly normal and responding intelligently prior to the vaccines) and he can not argue with them. No matter how much the American Academy of Pediatrics stands by their vaccination schedule, they can't prove that their vaccines aren't risky. Therefore, our pediatrician told us right away that he is not going to insist that we do things his way as a doctor, but rather he will give us the freedom to do what we feel most comfortable with as parents. With that said, as more and more parents are choosing not to vaccinate at all, children are starting to contract more diseases.

So, we asked him what he recommended for parents like us. He said to wait on the "controversial vaccines" until after the age of two. By that time the brain is done being formed, so it's not as likely for children to develop these brain disorders, and childrens' immune systems are stronger and better able to handle the vaccines so then they're not as weak and susceptible to contracting viruses and other illnesses. They are also still young enough when getting the vaccines that they're not likely to be exposed to the diseases (especially babies like Logan who aren't in daycare).

Since, fortunately, thimerosal has been removed from vaccines (what started the controversy, as it is mercury--which, even the small amount in vaccines has been linked to late walking, talking, abnormal neurological scores, and nueurotoxicity in infants), now most of the controversy lies with the vaccines that have more than one dose in them, such as DTaP, which Logan was supposed to get this time but did not because it contains the vaccination for Diphtheria, Tetanus, AND Pertussis all in one. (Plus, I got the tetanus shot when I was pregnant and I read we should both be safe for five years). He also did not get the Hep. B vaccine (just like he didn't get it at birth) since it's basically an STD, or polio since there hasn't been a case of it in the United States since the 1970's. Instead, Logan received the Hib, Rotavirus, and Pneumococcal Conjugate. (The Hib and PC were shots, while the Rotavirus was a drink.)

By the time Logan is five yrs old and ready for school, he will have caught up to the standard schedule and will have all of his vaccinations. But in the meantime he'll be on a delayed schedule, where we'll do just half of his vaccines each time. I feel good about this, as it is more in line with the schedule that was followed when I was growing up (now kids are given triple the amount of vaccines).

Hopefully soon the American Academy of Pediatrics will come up with an entire new schedule and parents won't have to make these tough decisions ourselves. I pray Logan won't be exposed to such diseases as measles, mumps, and rubella--as the MMR is the most controversial shot of them all, usually given at 12 months, but Logan will definitely not be getting that until way after the age of two. Especially with his surgery coming up I don't want to make him weaker and more susceptible to brain and immune disorders.

Anyway, but the vaccines ended up being the last thing on my mind on Wednesday. Once we came home from the pediatrician's appt. I realized I had a lot of unanswered questions about brachial cleft, and so I looked up on the internet to see what I could find.

I was disappointed by the lack of information. Because it is rare and there are several types (it's something adults can get, too--only as an actual cyst/growth on their neck) it was hard to find facts about the kind Logan has. What I did determine from several websites was that it is something that occurs within the first four weeks of development within the womb and also that it is genetic.

Yesterday I learned that my mother-in-law, her dad, Joe's sister, two of Joe's nephews, and one of their babies all have this on their ear, so it appears Logan inherited the same trait but ended up with it on his neck instead! Joe's mom said that her dad's drained fluid as well, and one of Joe's nephew's has been infected; maybe it's not as serious when it's on the ear. So at least I'm not beating myself up about it anymore. At first when I learned it was a birth defect I was like, but I followed all of the rules to avoid them while pregnant, what did I do wrong?!

Also, when my pediatrician said that we needed to make an appt. with the plastic surgeon within the week I was thinking this was something urgent/emergency that needed to be done ASAP. But we called the plastic surgeon's office that afternoon and they said the doctor was out of town until July 1st and would be back for two days and then gone again until the 24th. They said we could come in on the 1st to get our questions answered, find out his opinion on what we should do, and probably schedule the surgery for the end of the month. When we called our pediatrician's office and asked if this was okay, they said "yes." In the meantime, we are also getting a second opinion from an Ear, Nose, and Throat doctor that our pediatrician recommended, and then will choose between the two as far as who does the surgery. I still have a lot of questions.

The fluid is from the sinuses, and surgery always corrects the problem, so I'm glad that it is fixable and that afterwards it should be like it never happened. There are definitely a lot worse conditions Logan could have and it has helped a lot to hear from family and friends who have had babies or have known other babies who've gone through surgeries and have turned out okay and are now happy & healthy.

I'm sure the week Logan has surgery will still be emotional for me, though. I'm glad that he's too young to know what's going on. . .he won't know beforehand, or during (since he'll be "out"), and I'm sure they'll give him something for pain afterwards--so the surgery will probably be harder for me than him. At least he is a strong baby so that should work to his advantage, and by the time he has it he'll be a month older which means he'll be that much tougher.

Of course I've been obsessed with watching the hole now, like when he's drinking from a bottle I do notice the area becoming wet. I was hoping maybe the fluid draining was a one-time-thing that just happened to be at the ped.'s office (because then he wouldn't need surgery yet) but it seems to be getting more regular.

I'm trusting God that everything will be okay. Hopefully this will be it for hospitals for Logan!!! He couldn't possibly have any more love in his life so that's the main thing.

On a brighter note, Logan met his first friend on Friday, June 20th. You might remember me mentioning that Joe used to work with a guy (Matt) whose wife coincidentally also found out she was pregnant on Labor Day. They were due a couple of weeks before us but ended up having their baby six days later. Even though Joe doesn't work with Matt anymore, they golf every now and then with the company's league and compared stories while us wives were pregnant. We all thought it'd be fun to get together for a playdate once the boys were born, and so they invited us over last weekend--but that's when Joe went to his class reunion. Originally, I had thought about going to my class reunion this past weekend, but decided not to, so we invited them over to our house to grill out. It was so much fun, we've decided to do it regularly and watch the boys grow up together :-) They have their two month check up on Tuesday and are guessing Jaxson is in the 90th percentile with his weight as well. He was almost 9 lbs at birth and was--and is--taller than Logan, but feels equal in weight when holding him.

On Saturday, we invited Nick & Heather over. (Like Matt, Nick used to work with Joe at his old place of employment.) I haven't scrapbooked since the end of March so Heather brought over her stuff and we did that while the guys installed our second garage door opener. The last time Nick was here was when we installed the first garage door opener on Labor Day. . .just hours before I found out I was pregnant :-) Hopefully I can return to the actual scrapbooking nights at the store in July. Also, my neighbor Jenn said she's still doing every other Thursday at her house, so maybe I'll re-join her in July as well. I need to get going on Logan's scrapbook!!!!

Anyway, it was the first time for having Heather over at our house so she got to meet my doggies and we ordered Gambino's pizza and chatted while the guys played guitar hero before calling it a night. I was glad I had these distractions on Fri & Sat, and am getting together with Lisa P for lunch this Thursday (she & her husband used to work with Joe as well) so am very much looking forward to that as well!

Otherwise, that's about it for my update. I went back and read my blogs so far and there are some things I accidentally left out, so I'll conclude with them:

1) For my first two weeks after giving birth I kept waking up in the night drenched in sweat. I was never hot or sick so I thought it was really weird. But on day twelve I went to get my hair high-lighted and my stylist asked, "Have you had the night sweats?" I was like, "OMG yes! I didn't know what they were!" Apparently it is normal in the couple of weeks following birth to sweat, as your body's hormones return to normal. Ironically, it stopped after that.

2) I also leaked breast milk constantly at night from two weeks up until around my "Breastfeeding Rollercoaster" blog. Now that I'm basically just breastfeeding, I'm not waking up drenched if a feeding is delayed. I think it's because Logan doesn't really have a pattern or schedule, so my milk holds off until I pick him up or take off my shirt--then it starts SPRAYING which can be crazy when I'm not prepared. Like, when I get out of the shower I have to hurry up and cover my chest with a towel because it will just go all over the bathroom! Ah, the things we never knew. . .

Anyway, when I pumped all of the time, my breasts hurt & leaked every two hours on the dot. Logan was taking his bottle like clockwork (pretty much the same minute, every two hours). But brestfeeding has made him much less predictable. He might want to eat an hour after the last feeding--but then not again for 5 hours! At first this made me uneasy because I'm a structured person and liked the predictability, but since Logan has been so content and doing so well with breastfeeding (and obviously isn't lacking any nutrients) I realize that I need to just let him guide me and not force him to be on the time-table that I'd prefer. I've learned that he knows more about himself than I do and so I trust his signals as far as what is best for him. I don't want to take that away because hopefully that will help him to continue to be assertive and in tune with himself as he gets older.

Don't get me wrong--this doesn't mean I'm going to cater to his every need as he gets older, but right now it appears that nature is taking more of its course than Logan trying to be spoiled--and I think its like that for a reason so that he is at his healthiest.

I don't quite understand it because on average he nurses for only ten minutes at a time, while when I pump it's for twenty minutes and he always demands the entire bottle (so when nursing, the amount has to be half that and yet he's okay with it). But there's no reason to complain, he's even been sleeping better and longer during the night since breastfeeding all of the time.

Except for last Monday night, however. I was up with him for 5 hrs straight (from 2-7 AM)--ICK! I felt very run down and was worried I was going to get sick. Last night, though, he only got up twice from 11 PM to 11 AM. (He was very awake earlier that day when Nick & Heather were here, but not at all when Matt & Stacy were on Friday.) I ended up pumping the most I ever have--10 oz in one sitting! But he slept six hours straight. So even though each day is different, as long as the majority of the night Logan is sleeping, and the morning & evening he is awake (which seems to be the case) I don't mind. (FYI babies at this age generally sleep 15 hrs total a day.)

He appears to be a morning person (unlike me) and is at his most active between 7-10 AM. He is full of smiles and laughs and curiosity. He especially LOVES his mobile. Every morning I turn it on and his entire face lights up and he grins from ear to ear. It brings him so much joy and happiness, it really melts my heart and is the highlight of my day!!!

Every now and then we'll have a relapse with breastfeeding (for example, once in awhile he seems addicted--like he just wants to breastfeed forever--but an hour is my limit so I usually keep one bottle in the fridge each day incase of times like that) but 99% of the time it is easy now, I can't believe it. It's how I always imagined & hoped in the beginning!!!

3) Logan has outgrown his first outfit (a onesie that says "Nothings wrong, just testing you") and has almost outgrown another (the shirt & pants he wore home from the hospital that's in his hospital picture). Considering 0-3 month clothes are for up to 14 pounds, I'm guessing he'll be in the 3-6 month clothes any day. He's already worn two of those--it's bittersweet :/ I love that he's going on to a new phase in his life (more interactive and fun) but I've really loved the newborn phase (he's just the sweetest thing ever, he can do no wrong) and I don't want his childhood to go too fast!

4) Logan has started scooting (actually moving, but with his limbs straight out) already when he's on his tummy! He also has waved and said hi. Hear me out, LOL! The first day was at four weeks old. I said "Hi Logan" and he went, "Hi!" I told Joe and he was like, "Um, I think you need more sleep." Of course he didn't believe me. . .until he heard it for himself. Obviously I know Logan isn't seriously saying "hi" but you know how all babies have a favorite sound they make? Well, his is "hi." He says it every day, sometimes it's a happy "hi," other times it's a mad "hi" and other time it's just a regular old "hi." He'll be in his pack n play and we'll walk by as he says "hi," so we'll say "hi Logan"--it's so funny. As for the wave, the first time happened at seven weeks old when we were back in Iowa at my dad's house. My grandma waved to him and he waved back. I actually didn't see it, but four other people witnessed it. But I had my own experience just this past week. He was in his carseat looking at me so I waved and he brought up his hand and waved it. Once again, I know it wasn't real, but the timing of these make it fun. :-)

5) He has both Joe & my cowlicks, poor guy, haha! I have one in my bang area (although it's not as bad now as when I was little) and Joe has a Dennis the Menace one in back. Both of Logan's are small, but it's cool to see our traits in him (since we still can't really pick out his other features).

6) I've started cutting his fingernails! This is a big deal, I've been scared to do it my entire life. I remember thinking in high school that I dreaded when I had a baby and would have to do it. But from the day Logan was born he's been scratching his face and so I knew I'd have to get over my fear. For the first eight weeks the doctors recommended we just file them, but we couldn't seem to do it often enough because when he got frustrated he still scratched his face pretty bad (as well as me--and it hurts). My stepmom had bought me some baby safety clippers for Christmas and so I got them out this past week and went for it. . .and it was so easy! I don't know why I was so chicken. In fact, I think I'll probably do it every day now because even just a couple of days after I did it last week he scratched his face again. They grow a mile a minute.

As of last night (Sunday) we're also giving him a real bath every night. Up until then we were just doing wet washcloths irregularly (which doctors recommend for the first two months). I'm hoping the daily shampoos will get rid of his cradle cap because he still has the newborn dandruff. He seemed to like the "real bath" much better (I think it was like a hot tub for him)--he actually smiled a few times when normally he cries.

7) We're supposed to keep Logan pretty covered when he's outside. Our pediatrician said that he can't wear sunscreen yet, and even so it isn't enough to protect babies' skin before six months of age. We've still been taking our walks about three times each week in the evenings so that's been fun. I've only done my aerobics that one day I mentioned, though, but fortunately I still lost my final two pounds of my pregnancy weight by Logan's two month birthday!

8) Just a random thought--I really don't understand child abuse. Not that I really did before having Logan, but now it's even more insane to me that anyone could hurt a baby. Even when he's fussy it's not something that could provoke anger in me--he's too innocent!!! What is wrong with people? I can't stand to hear the news of shaken baby syndrome or parents murdering their children.

9) Joe & I have come to the realization that we need godparents and have no clue who to put in our wills if something was to happen to us. Hopefully it never happens because right now we don't know who we'd want to raise Logan. We either don't know the people in our family well enough or we know them too well, haha. But we're going to try to make a decision by the time of his dedication in July.

10) Sarah S. (another wife of one of Joe's old co-workers, who is due in November) found out this week that she's having a boy! Welcome to the club! Joe wasn't surprised because there's a jinx at his old office (where Sarah's husband works) that makes everyone have the sex that they are. Maybe Lisa P. will break that jinx if she has a boy (since she works there). . .