Helmet or Surgery for Head Shape

We had our one month appointment today & finally the Ped agrees with me that Aiden's head shape is NOT getting better! Everyone keeps commenting that it will fix itself on it's own, but thus far it is NOT...in fact, I think it's worsening. He was breach & was shoved up under my ribcage, so he was born with a misshaped head (despite being a csection baby) that has slightly corrected itself, but he still has that misshapen part, plus now he's flattening on his left & getting a bulge like appearance on the right (he's favoring turning towards the left now too). ANYWAY, the Ped examined him good & sent us for skull xrays, wondering if his skull bones aren't prematurely fusing in an incorrect fashion. If so, my poor peanut will require SURGERY! If he feels that the bones truly are fusing or there are problems, we'll see a Neurologist & then get referred to a surgeon at Mayo Clinic....how scary! I'm trying not to obsess over that yet since he thinks it isn't that severe & that we will just have to treat his head cosmetically with a helmet.

My questions are in regards to anyone having had the surgery to fix the skull and/or anyone who had to use a helmet to fix skull shape. Being that he's so little, I'm thinking that he shouldn't require the helmet for long...or am I totally wrong? The Ped didn't want to discuss either very much until we knew what we were dealing with.

Regardless, both situations suck for him, but we're obviously praying it can be fixed non surgically.

Any stories would be welcomed!!!

 

:hug99: We're currently doing the helmet thing and the specialist told us that the earlier you start, the less time your kiddo will have to wear it! They have more growth spurts when they're younger so it's supposed to be easier to correct.

 

Thanks for the reply. How long have your boys (or boy?) been wearing the helmet? How often do they have to wear it (ie how many hours per day)? How long do you expect them to have to wear it (weeks? months?) ? Do you have to get a new helmet every so often or is it just one? Do the babies tolerate it okay?

As you can tell, I'm full of questions!!!

 

No problem! He was measured and photographed for it several weeks ago and we get it tomorrow. Big day! Only one of our little guys will be needing one and Jonathan will be wearing it 23 hours a day. They told us the hour off is for washing the helmet and bathing. Because he is 7 months old, they think he'll wear it for 3 1/2 to 5 months - depending on his growth and progress. I guess if we would have done this sooner, it might have been less time in the helmet (more growth spurts when they're younger).

The helmets only weigh 6 oz and I'm told it doesn't bother them at all! I'm a little nervous, but I think he'll be ok!

Good luck to you and feel free to PM me for more details! I'm happy to share my experiences!

 

Our twins got theirs this past Tuesday. They are now 9 months old, so they will need to wear them longer that your baby will have to. I am not gonna lie, they don't really like them but I must say it is going a lot better than I thought it would. They have you put the helmets on for gradually increasing time frames also to get them used to it and to see how they tolerate it. It's not like, ok you go cold turkey to 22 hours a day. Luckily your baby is still very young, I think it will work quickly and he will be used to it in no time. Good luck!

 

My name is Kelly and I have b/f twins.. and our girl wore the helmet for 6 months, you get fited like a casting of the head, and choose the pattern you want on it and about 2 week later you go back for a fitting. if it fit well you take it with you, you get a wearing schudle and you start like a hr on a hr off a few times a day, then the next it 2 hrs on 2 h off, then by the end it 23 hrs out of the day and you can only take if off for bath time, We would go in weekly at frist and then it went to bi weekly he wanst growing to fast so we didnt need adjusments to often at frist, you go to the place you get it and if it only a few months they ay 6 months is normal time, and Addison was baaaaaaaaaad! her ears were 1 3/4 inches differnce they were noticalbe off centered... after 6 months almot 7 we were done, her' was a bad case they said and mot after a few weeks you can can see a change, Addison after 3 week you could see the differnce, her forehaed was to the rt and the left side was very flat, however not anymore, if they dont end you to a dr to ask if he can do the helment , they told us that up tp 10 month you can try it, Id try that before I do ugery any day, its a pain in the A$$ but it was so much better then sugery.... Ill see if I can find a pic of her in her lil helmet that had butterfly on it lol... and after a week or 2 she wasnt bad at all, she would fight at first to not want it on, and people would look at us like OMG whats wrong with your kid?? But hey its my baby and she will have a great head when its over and she does!!! Okay sorry I cant find t online however it was baddddddd and they suggested the sugery to and a new ped said wait try this and its great, you can see her pic on my aol page or email me and I can send ya one to see how great it worked!!! Good luck email me and please keep me posted.. [email protected]

 

Joseph graduated from his helmet on Aug 8th...he wore it from May 2nd til then...he really adjusted VERY quickly (only took a few days and that was because he has extremely sensative skin and we live in FL with the summer heat and humidity) He was so cute in it and several people did ask about it but there weren't people freaking out or anything. He wore it 23 hours a day (like pp said)...the reasoning behind wearing so much is that growth spurts are always happening so the more they wear it the quicker they will be done. I'll attach a few pics...first a few of his casting- he was such a trooper and barely fussed at all...

step 1
next
still being so good
almost done- this is where he fussed a little
all finished!!!

Here is a pic with him in his helmet...his smile filled the whole face area!!!

 

We had the CT to be sure the bones weren't fused and then they wore helmets for 7 months (including an entire Summer)... but we started later (scanned at 6 months, had them on by 7). It all went very well and was easier on them then it was on me. My guys didn't fuss at all during the casting process (the only boy who fussed was the one waiting in the stroller) or at the fitting. Trevor actually took a nap in his helmet while Trent was getting his fitted. They wore them a couple hours on and an hour off the first day and then all day the second day (with periodic checks for red marks) and slept in them that second night. I'm glad we did it.

 

a friend of mine had to have her son get one and he got it around 5-6 mos and only wore it 6 weeks!

 

Thank you for your replies & input. It's good to hear all the success stories!

We got a call from our Ped this morning saying that he couldn't tell if Aiden's bones had fused by yesterday's xrays, but was waiting to hear from the Neurologist for his opinion. Then his nurse called & said the neurologist's office will be calling to move up our appt (we weren't able to get in until October originally) & schedule any further imagining, such as a CT. I'm scared to DEATH of doing a CT...don't they have to sedate the baby? Did anyone else have to have a CT prior to their helmets being made? Obviously we'll do what's best for Aiden, but hopefully whatever's least invasive.

 

My son needed a scan of his head at 5 months (he had an unusually big dip on the top of his head). It only took a minute or two. He did cry but it was not horrible. I had to hold him down because he wanted to move. Hopefully if he has a scan it is the same type of scan because then you dont need to worry. :hug99:

 

Mine did have the CT and they were sedated for it. It was a very mild sedation so their sleep was actual sleep and you had to be careful putting them on the table so that you didn't wake them (a real trick with mine since they've always been prone to waking with movement). Trevor did wake but he popped in his thumb and dozed off again. It's very quick and they had me stay in the room.

The hardest part about sedation is the fasting before. You can't explain to a baby why they can't eat. My appointment was in the late morning so I actually set an alarm and woke them in the middle of the night to nurse at the last possible moment (and I'd been told three different amounts of time by three different people so I went with the shortest one). There was enough distraction with all of the unfamiliar stuff going on that they didn't seem to notice they were hungry until they woke from the sedation.

 

Christina,
Joseph looks soooo cute! I love how you decorated his helmet!

 

Hi! I just wanted to say that I'm in the same boat but my boys are older. We do have an appointment on the 31st which I'm really anxious about. I don't really mind the helmets as long as the insurance covers it and hopefully he (only one twin looks like he needs it) tolerates it.

Melissa (2boysforus) hope Jonathan tolerates the helmet well! Please let us know how it goes and good luck!

Christina, Joseph looks soooooo adorable in his helmet! So cute!

 

My son had a CT scan at 8 weeks old. He didn't have to be sedated for it, they strapped him on, covered him up and put the shield on him. Almost like he was totally swaddled. I got to stand right next to him in the machine, it didn't take long at all.

I hope your little one doesn't need sedation, at that age, they don't fight as much. I'll keep my fingers crossed for you!

 

I didn't realize how prevalent these helmets were! My Ped said they're more common in older babies due to the 'Back To Sleep' campaign that leaves babies on their backs a lot. He also said something about it being seen more in multiples, since they aren't held as much as singletons & tend to be put on the floor on their back or in bouncers/swings where they may tend to turn their head one specific way. Our baby was BORN with the misshaped head, so that's why I seem to be dealing with this much sooner than most.

It's reassuring hearing that some of the littler ones didn't require sedation for CT scans, which we hopefully won't need anyway. We'll know more Monday at our appt with the neurologist. Sounds like we'll need SOME sort of intervention, but the Ped today said he didn't THINK Aiden's bones had fused by looking at his xrays (meaning we wouldn't require surgery), but he's not the expert. That's what we have Monday's appt for!

Christina, I agree with everyone else...Joseph looks SOOO cute in his helmet!

Marie, good luck at your appt! Keep us posted!

Kelly, glad to hear Addison responded so well to her helmet!

Melissa, how's Jonathan doing with his helmet? How did you have it decorated?

Ilyse, both your babes have the helmets? Wow, I bet that's a lot of work! Are things still going well for them?

Thanks again for all your responses!!

 

Thanks for the compliments on Joseph...I do tend to agree but I'm a little biased

I went to Michael's scrapbooking section and got stickers. I found that the ones with the clear background stayed on best...stickers were much less expensive than the alternative of having it professionally painted/decorated...the place I found that did it the decorations STARTED at $75 and they told me that it would need to be touched up since the paint tended to chip...touchups started at $10. With the stickers they are fairly inexpensive and I changed them a few times for a total of less than one touchup.

Good luck with the scan. I will continue to follow your story so please keep us updated (that actually goes for everyone out there who are involved with the helmets...it's always good to hear success stories)

 

It is quite common in multiple births to have head shape issues caused by their inutero position (read lack of space). The target age if helmeting is necessary is usually 4 months, very few if any docs will start treatment prior to 4 months. Kyle wore his helmet for just under 4 months, never had any additional testing besides head measuring.

 

Just thought I would update after our neurologist appt for Aiden. He believes all of Aiden's sutures are still open (YIPPEE) but can't be 100% certain by the crummy xrays. I can't remember the exact name of his condition...positional plagiocephaly maybe? Anyways, he thinks because Aiden's head was mishapen at birth & he had poor neck control at that time (still not the greatest) made him more apt to turn his head to his right. He believes if we keep him off the right side of his head, we can fix the problem on our own! So now we've turned him around in his crib so that he has to look left to see his crib soother, we put a 'wedge' in there to keep him kinda sleeping on his left side, & whenever he's playing with toys, we always put them to his left. So far, so good. I thought he'd fuss trying to sleep on a side he wasn't used to, but he did great yesterday & last night! My only problem is that when he's swaddled, he lays on his little arm in the wedge. So, after he slept on & off like that for around 3 hrs last night (kinda fussing), I unswaddled him & he slept the rest of the night with no fuss! The neurologist said we should see some improvement over the next month or so, but if not, we're supposed to go back around 3-4 mos & get the helmet. Hopefully we can do this on our own, so wish us luck!!!

 

Your situation sounds so very similar to ours. Our daughter was born vaginally but our son was born by emergency c-section, so his head shape should have been perfectly round. Well, at the hospital only 2 days old, our ped didn't like the rectangular shape of his head so he rec'd to have an xray done at only 3 days old. After discussing it with my husband and doctor, we went ahead and did it. Well, the xray results were inconclusive. Our ped and radiologist believed the sagittal sutures were fused so we went and saw a neurosurgeon. The neurosurgeon made some measurements of his head and felt the sutures by hand and stated that his sutures were all open and that his head shape was due to his placement in utero. He didn't even want to discuss helmets, etc... as our son was only 1 week old. We returned at 2 months of age and again at 3.5 months of age. At each visit his head shape was improving and growing appropriately. He was 100% certain that there was no need for a helmet. I did lots of tummy time with him, about 1-1.5 hours a day and he really didn't like it. I tried several different ways to do it like having him lay on me, on a boppy, watching his toys, etc... I would do about 10-15 min throughout the day and try to equal about an hour. It was challenging but way worth it. At his 3.5 month appt his head shape was absolutely fine, no flat spots or anything. I hope things improve for you and your little one!