It turns out that my husband was thinking the same thing this past summer. Our pediatrician is only about 7 miles away but it usually takes us an hour to get there because the traffic is always in a snarl around Longwood Medical Center in Boston. Maybe it was time to get a new doctor closer to home?
But our doctor is really awesome and he’s also affiliated with Boston Children’s Hospital. If anything ever happened, I’d want my kids to be treated there, especially if it’s something unusual.
In August, my daughter brought home a virus that was running rampant at her sleepaway camp. She was sick with fever, persistent cough and achy limbs for about 5 weeks. My husband was even sicker. PickyKidPix couldn’t play soccer for two weeks, a first for her. I was in bed for a week but my son was only sick for about a weekend. It turned out that his virus seemed to go into his neck where a strange swelling occurred.
The Lump: AKA The Evil Unborn Twin My Son Named “Greg”
At first, I pooh poohed the lump, thinking it was an infected lymph node. After 2 weeks, my husband freaked out and rushed him to the pediatrician. The blood work came back negative and the lump got smaller so we all breathed a sigh of relief!
But then, a week later, the lump got bigger and bigger! We went back to the pediatrician who was pretty sure that it would not need to be removed but recommended that we get an ultrasound and see a specialist, Dr. Michael Cunningham in Ear, Nose, Throat at Boston Children’s Hospital.
My husband joked that the lump was our son’s evil unborn twin. My son promptly named it “Greg”. His friends all started referring to it as “Greg” as well.
The Ultrasound: It Needed to Be Removed
The ultrasound at Children’s Hospital was but a walk across the street and a short wait. The lump was filled with fluid — good news! — because solid would indicate possible cancer. A fluid filled lump was likely a benign cyst but it would probably have to be surgically removed, a little tricky because it’s under the muscles and near an artery.
The round thing in the middle of the ultrasound is the cyst.
The MRI: A Day of Mishaps
Dr. Cunningham, the ENT specialist, turned out to be a rockstar. He has the bedside manner of the perfect children’s doctor and he was reassuring and helpful. We could not be in better hands. He needed an MRI for the surgery for the precise location of important arteries to avoid so we drove an hour away to Peabody that same day after our appointment with him to get the MRI scan. No time like the present.
The MRI took about an hour and went smoothly enough, but then we had a series of fails.
Flat tire in the parking lot!
We needed a flatbed tow truck tow the car which is not fast!
Even the snack machine refused to cooperate! The Doritos bag got stuck and refused to come down the chute! It was a lot of bad news in one day. My son would have to have surgery. My husband’s car would have to get four new tires. And I would have to get a new snack.
The Surgery: 3 Days at Boston Children’s Hospital
Because my son’s surgery was considered elective — there was a possibility that the cyst could become infected and also could possibly burst — we were able to delay the surgery for about a week so that my son could enjoy his 10th birthday party which was set up months ago. By the day of the surgery despite a round of antibiotics that our doctor hoped would shrink the cyst, it only grew bigger!
What is surgery like at Boston Children’s Hospital? It really is an amazing experience. You are at the Disneyworld of children’s hospitals where the lines are short and every detail is taken care of for you.
My son loved the warm blankets that are kept in a special machine that looks like a refrigerator. He could help himself to a warm blanket whenever he wanted!
We did come in a week before the surgery for the pre-op appointment. We met with anesthesia and set up the paperwork for the surgery. My son was thoroughly informed with what was to happen to him including choosing which flavor of gas he wanted in order to go to sleep. He chose raspberry but cotton candy was a close second!
The day of the surgery, we started early and went to the pre-op center where we waited in a room and then went to the surgical waiting area where my son changed into hospital pjs. We ran into this delivery robot on the way there!
While we waited for my son to go into surgery, a volunteer caricaturist drew my son anyway he wanted. He chose ninja. I snuggled with my son and read him the last installment of Percy Jackson, The Blood of Olympus by Rick Riordan. Both were a nice distraction for my son. My husband went into the operating room with him until he went to sleep and then we both waited outside until the surgery was over.
Two and a half hours later, the surgery was complete. The cyst, the size of an egg, was removed from under the muscles of my son’s neck. The incision was large and it took two and a half more days in the hospital for the wound to drain out before we could go home. I think Blood of Olympus was a good choice for a book … blood was involved in both worlds!
It’s been over a month now and my son is fully recovered. We were lucky that the incision healed nicely and did not get infected. The scar is shrinking and will fade into a small line in time. Our doctor placed it on the neck where there would naturally be a fold anyway, but we all agree that chicks dig scars and that scars are pretty cool!
The families that we encountered in the pre-op waiting area came from all over the world. We feel so fortunate that Boston Children’s Hospital is only 7 miles from where we live. If your child has a weird genetic malformation like my son’s cyst (diagnosed a Brachial Cleft cyst resulting from genetic material going awry during his formation in the womb), Children’s Hospital is the place to be. They have seen it all!
My husband jokes that my son’s cyst is due to my smoking crack when I was pregnant (because my son also was underformed ears and a bald spot on his head also caused by cells not going where they were supposed to in gestation). That’s not true! But one thing is for sure: we are NOT switching pediatricians!
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26 thoughts on “My Son’s Evil Unborn Twin Surgery”
Wow, if I ever have surgery *I* want to go to Boston Children’s Hospital! Sounds like the kind of experience every hospital should offer. I would love the warm blankets! 🙂
Boston Children’s Hospital is every bit as good as I have heard it to be! And the warm blankets were a nice touch! We miss those!
So glad to hear about your relatively pleasant hospital stay and that your kiddo is doing well!
Thanks so much Jen!! He’s 100% back to normal but with a new cool (but big) scar! It goes with his bald spot LOL!
That must have been scary when you discovered the cyst. Never heard of anything like that before. He is such a lucky boy. Glad he’s back to normal in time for Christmas!
Thanks so much Patricia,
I was most nervous about anesthesia but the docs there were like, “A healthy 10-year-old is a walk in the park to put under compared to what we are used to!” which made me feel much better. They put premies under with lots of medical complications for surgery — that’s really scary as parent to have to go through!
Brave little trouper and brave mama, too. My husband is a pediatrician and we live in a much smaller town than the two he trained in. We miss living near a facility like this one!
Thanks so much! It was a longer hospital stay that what we hoped for but it turned out fine. There is an Au Bon Pain in the building open 24 hours a day that we visited several times a day. It’s a great facility but I worried a lot about the “super germs” there! We washed our hands constantly.
Wow, what an ordeal! Sounds like you and the family handled it very well. Those warm blankets are the best! Glad everything worked out nicely.
Thanks so much Lucy!
Boston Children’s is definitely a great place to receive treatment for things like this! I’m so glad recovery is going smoothly. Surgery is always scary.
Thanks so much! He’s fully recovered now. Surgery is always scary but if I could, even as an adult, I would request Boston Children’s Hospital! (My friends who know a surgeon there will actually get surgery done there as an adult; you can only pull it off though if you have a friend who is the surgeon that works there!).
Boy, that sounds hard! My son had surgery on his knee when he was 12, at the children’s hospital at Stanford (called Packard). What a huge difference it made to know we were in one of the best places for pediatric surgery. My husband and I live in Southern New Mexico now, and the hospital quality is abysmal compared to Stanford and Packard. Gotta get back to California….
I’m so glad your son is doing well!
Stanford’s hospital is amazing too! I can see why people fly into teaching hospitals now!
My baby boy is going through something similar right now we’re going to Loma Linda University for CT scans and testing. They seem about same area and the same material. We’ve had an ultrasound done but they diagnosed it as a swollen lymph node the ENT specialist says it’s a cyst that needs to be removed. We hope for great results just like your son had but as a nervous mommy I’ve been Googling things on WebMD which I shouldn’t be. Wishing for the best hope your son is doing well.
We went to an ENT specialist who says this is rare but he’s seen only one other that was larger. It’s nerve wracking to have your child go through surgery. I wish you the best and I’m sure you are in good hands!
Hi! I would first like to say thanks for sharing your son’s story. It has been really helpful. My son is having surgery on Tuesday for a possible branchial cleft cyst. It looks very similar to your son’s cyst. As a concerned mom, I have a couple of questions. Did you know before the surgery that it was a branchial cleft cyst? Also, what type did your son have… 1st, 2nd, 3rd, or 4th?
Our surgeon was 99% sure that it was a brachial cleft cyst before the surgery, but I don’t recall it ever having a number type. It was removed, frozen, and tested for cancer but came back negative. Is the number regarding the size? It turned out to be much larger than the surgeon realized; the size of a large hen’s egg.
Thanks for your quick response. Our surgeon says it could possibly be a branchial cleft cyst, but would not know for certain until it is removed. I’m worried it is something more serious, but it does look just like your son’s cyst. The type refers to where it is located. The 2nd is the most common, but from the articles I have read I think my son may have the 1st type. How long did it take your son to recover? Was he in a lot of pain after the surgery?
Our surgeon mentioned two other cysts that it could have been, but more remotely and they were similar, benign cysts. The MRI showed that it was perfectly symmetrical and fluid filled which is good news since it’s not cancerous. My son’s was underneath neck muscle so a bit tricky to remove but it was extracted in entirely and without puncturing it. The fluid was pus and the doctor didn’t want the cyst to open at anytime since it can cause complications. We were in the hospital for three nights mostly so that the area could drain completely before leaving. After that, he missed school for a few days, for a total of one week. He didn’t go to boxing or soccer for a week after that I think because there’s a lot of turning. He wasn’t in pain but he has a high threshold for pain. He had painkillers while he was in the hospital so he didn’t have any pain then. When we came home, he never took his pain medication which was over the counter at the point I think, because he felt fine. The scar was pretty long on his neck. We used ScarAway — those bandage things — a few months later to minimize the bump on the scar. It worked really well. Now, you hardly notice the scar at all; the surgeon also put it on a neck crease and we all think the scar is cool. It’s about four inches. During the hospital stay, the TV and DVDs did not interest my son so I read to him most of the time or he played on his iPad. He was 10 at the time?? Luckily the last Percy Jackson book was just out so I read it to him for three days which entertained him. Immediately after the surgery in the recovery room, he told the nurse that his pain scale was .2 on a scale of 1 to 10 which made the nurse laugh. She still gave him some pain meds though.
Thanks so much for the info!! It helps to know kind of what to expect. I hope we have the same great outcome as your son. My son is only 2 1/2 and very active. I’m concern how he will do in the hospital. We were told to expect to stay for at least one night. He had a ct scan a couple weeks ago and the the surgeon said he could tell it was filled with fluid as well. Because of his age he was put to sleep for the ct scan which lasted about 45 min. The surgery tomorrow is scheduled for 4 hours. I am hoping it doesn’t last that long. The surgeon is also going to check on his right ear tube and remove it if it needs to be,but that should not take more than 15 minutes. Did you expect the surgery to last more than 2 1/2 hours. I am also worried about nerve damage. I know there is so many nerves in the neck. I will be so excited when this is all over with.
I think our surgery took about 4 hours as well. It’s intricate to get it out in one piece behind the muscles so that is what is time consuming. I don’t think there is concern for nerve damage; they mark each thing pretty clearly with colored fluids and use guided technology when they do the surgery I think. The procedure and healing went very smoothly; no issues at all. They just had him stay longer than one night so that the drain could be removed before going home and it took 3 days for it to drain. Because your son already had anesthesia, there should be no surprises there. That’s actually the only real danger of the operation but I’m sure your hospital has a very good track record. We were at Children’s Hospital and the anesthesiogist was saying how easy it was: healthy boy with no complications. They are used to premie babies with multiple issues so this is a walk in the park, relatively speaking. It made me feel so much better to hear this because that was my worry.
I am so glad I decided to email you. You have really calm my fears about tomorrow. Our surgeon and hospital are both great and my son is heathy besides the cyst. I’ll keep you posted! Thanks again!
Best of luck on the operation. I’m sure it will go well!
Surgery went well!!! What a relief! The surgery lasted 3 hours, but he was in recovery another hour before we got to see him. It was not a cyst after all, but an atypical mycobacterium neck mass which is basically a bad infection. My son is doing great and has no pain but we are giving him his pain medicine every four hours. He has a big bandage around his whole head and the drainage tube is underneath the bandage so we can’t see it. He will get the bandage and tube off tomorrow!! Thanks again for your help! I was surprise it was not the same thing as your son especially since it looked just like it and was about the same size.
I’m so glad the surgery went well! Sounds like your son is doing great! Soon, all he will have is a cool scar! Our surgeon suggested scar away after the scar healed because there was a raised ridge part. My son used that for a few weeks — it’s like a kind of tape — and the scar smoothed out nicely. Now, we just refer to it as “Greg.” So thankful for the wonderful medical care we received. Sounds like your medical care was great too!