Brachycephaly & Reflux

Having twins is hard because you are constantly making choices you wouldn’t otherwise have to make with one baby.  For example, which one to feed first when both are crying. Which one to pick up and hold if they are fussy.. the list goes on.  Recently this was brought to light even more by the discovery of some small but trying health problems that each twin has.

Lets start with Sasha – Sasha is the sweetest smiley adorable baby when she’s content and happy. She is extremely vocal and will literally just coo at you or herself in the mirror!

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Unfortunately, we don’t get to see smiling Sasha very often because she has Laryngomalacia, which makes her breathing VERY labored and she has had an almost permanent concerned frown on her face since she was born.   The first time we brought her to the ENT to assess the extent of her laryngomalacia, the laryngoscope didn’t show any redness around her esophagus, so we thought PERHAPS she did not have the reflux that almost certainly accompanies laryngomalacia. Fast forward a week or two later and she started to essentially pull off and cry and arch and writhe at every feeding and become extremely fussy -totally symptomatic for reflux. I know those symptoms like the back of my hand from what we went through with Jasper.

Instead of that content milk drunk feeling that normal babies experience after a feeding, eating sends these poor reflux babies into a spiral of fussiness!

So back to the ENT we went because I was not only concerned that she had developed reflux since we’d seen him, but also because Sasha’s laryngomalacia is so much more severe than Jasper’s was that I was starting to worry about her breathing. I’ll post a video later if I can of what she sounds like.. but the scary thing to me is that she has retractions when she breathes. I.e her throat and chest collapse inward a bit:

I know from my research that some LM babies have scary apnea episodes, low oxygen saturation and a host of other scary things – but my ENT didn’t warn me about any of those other than saying that LM can be “scary” so I’m still not sure how much to worry.. but the second scope did clearly show acute redness around her esophageal opening, consistent with reflux :(

So we have her on prevacid, but it hasn’t kicked in yet (takes about 14 days) so in the interim we are also giving her CVS generic brand Mylanta Cherry Supreme which is the only antacid without aluminum and seems to be helping some.

But, the problem is that she is quite “high needs” in terms of being soothed and held poor thing – just like Jasper was except that we of course have another baby!

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Fortunately Willow is usually a very low maintenance baby – so much so that in the beginning we were often picking up Sasha and willow would be left to hang out because she was so content she didn’t get held as much. But this came back to haunt us because she now has Brachycephaly :(

Brachycephaly is a flatness of the head – not on one side or the other like the more common plageocephaly , but of the ENTIRE back of the head which also makes the whole head appear wider and a strange bulging above the ears and the forehead too!

Now, to be fair to us she was actually born with it, we just didn’t know it had a name, or that it wasn’t just her “funny shaped head”. We would marvel at her wide square forehead and wonder “who she got it from” because it didn’t look like anyone else in the family!

I honestly always thought her headshape was off, but again didn’t realize it was pathological until I was researching flat head and came across a picture of a baby before and after helmet treatment and realized that Willow WAS the before picture!!

I since have read that the incidence of cranial deformities is much higher in twins, particularly baby A (Willow) because they are often squished further down between the pubic bone like Willow was plus Sasha was sitting on top of her!  In the words of a friend of mine who also had a baby A who needed a helmet: “Baby A gets SCREWED!”

So poor Willow already started out with flatness, but of course sleeping on her back makes it worse  as does pretty much ANYTHING other than her being on her belly or being held upright.

I even ordered her an expensive fancy Pillow from Europe that is supposed to keep the pressure off the back of her head. We call it “Willow’s Pillow”:

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By now I’m sure you can see the obvious problem: It’s nearly impossible to not put Willow down on her back/head when we have another baby to take care of!  Not to mention that the other baby is in need of almost constant soothing. So I find myself in the impossible situation of having to choose between the two needs – my reflux baby on the one hand and my flat headed baby on the other.

And of course the guilt.

I feel guilty every time I put Willow down that I am making her poor head worse! I read a post on a messageboard where the mother said that getting the helmet put on was an oddly huge relief because she could finally stop obsessing and worrying about her child’s head position. I can definitely relate to that!

And then there’s the issue that if we are constantly trying to hold Willow so she’s not back lying that poor Sasha will end up in the swing too much and end up with a flat spot herself.

In any event, we are going today to Cranial Technologies (the people who make the helmets) to have her head shape measured and assessed. That way when she reaches 4 months which is the earliest that our insurance will pay for a helmet, we can have her measured again and see if she’s gotten better or worse in the interim. If there are large improvements MAYBE we could get away without helmeting. But my gut feeling is that as long as she’s spending even a small number of waking hours on her back there will be little if no improvement. Best we can do at this point is try to keep it from getting worse.

So that’s the latest from the health front.  Not great, but certainly nothing major in scheme of things, particularly in light of recent unspeakably tragic events in the world :(

I’ll update more after we get Willow’s head measurements today!

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Marcia Schmitz says:

Omg how adorable and how awesome are you for keeping up with all those feedings?!

I haven’t been to your blog in a long time and just saw the post about breastfeeding your twins, I have to agree with Kimberly who suggested looking into tongue/lip ties. I remember how similar my oldest (Savannah who was born in August 08 like Jasper) was to Jasper. I remember reading your blog and thinking they were alike in too many ways. The reflux like symptoms, arching, high needs, poor sleeper, and this carried on for years. Well, after having my son who is 10 months now we discovered he had a posterior tongue tie and lip tie that was causing the same symptoms as his sister had. We checked Savannah’s a few months ago and she had a severe tongue and lip tie that explains all the difficulties I had nursing her and her behaviors beyond that, including some speech issues. With my son Noah, the tie caused more obvious symptoms or I just had more experienced people around me to diagnose it, the worst was lipstick shaped nipples and shallow latch. Dr. Kotlow is THE person to see for this.

Amy Cyphers says:

My middle child had the flat thing going on, so I tried different positions while he was awake. The Dr thought we might need to do a helmet, but once he started crawling and sitting up his head just kind of reshaped it’s self. He has a perfect head now (at 4 years old) but I worried about it constantly. Hopefully her’s will reshape too.
I hope you get a break soon. :( I know how tough one is… I can’t comprehend 2. I think twins seem to adapt to it, from what I can see of my friends 1 year old twins. They are the easiest going babies now. Hang in there!

Karen says:

Holy hands full Mama. I hope the helmet brings relief for you and the medicine relief for Sasha. Also, I have heard and read great success stories about babies with flat heads responding really well to cranial sacral. Such a gentle and effective treatment, but like all things “baby” a costly treatment. Might be good from now until you can get the helemt though? xoKaren

Kimberly says:

Oh, Ari… I wish I was close!!!
Don’t beat yourself up over the brachycephaly… the helmet will definitely correct it… but in the meantime, get Willow into tummy time rather than on her back… you can put her over a boppy or rolled towel/blanket for support under her shoulders (just form it into a horseshoe shape). Love to you and all three of your beautiful babies! xoxo

Kate says:

Ariana, they are absolutely delicious. I think I would be kissing Willow’s cheeks all day. I hope you get this sorted. My son was born with the most perfect little head but it wasn’t until he was around 6 months old that I noticed one side had flattened a bit due to nursing/co- sleeping on just one side. Oh, the guilt! It wasn’t bad enough to fix but I still feel a tinge of guilt about it.

ariana says:

Amy I definitely need to make more time to photograph them.. they definitely suffer from “second child syndrome” even worse though because of there being two!

Joanna, Willow is my one “easy” baby!! Well, except for the head thing.. but she’s so mellow – I’m definitely not used to it, it’s fabulous :)

sara says:

hi hi, i haven’t stopped by in forever… but i just did and saw you had your babies and just wanted to say hello (um, this may be my first comment!) and congratulations… what a beautiful family!! so happy for you… xx

Stephanie says:

They are so beautiful, and you are such a caring mom!

Joanna says:

I feel bad you can’t catch a break in terms of having an “easy” baby. If any consolation they are both beyond cute!

Tamara says:

Hang in there, Ari! I remember the head shape stress SO well, but in retrospect, I can recognize that there was no need to worry. You’re doing exactly what you need to do, and if/when a helmet becomes necessary, it will correct EVERYTHING no matter how much time she spends on her back now. Anticipation of a helmet is so much worse than the thing itself!! I’ll bet Jeff can design some cool art for her helmet and she’ll look like a skater gal or Roman goddess or something fabulous.
Twin moms are plagued with guilt for the first year… no matter how healthy our kids are! Sending you love and support!

Ava says:

Blah! Poor beebs. Hugs to all of you guys. I know you can’t help feeling how you feel, but they are both loved tremendously and they know it.

Oh Ariana, they are so beautiful! I’m sorry that you all have these issues to deal with. Has babywearing been of help to you?

jbhat says:

You DO have your hands full! Best of luck with these plans. Big squeezy hugs to all of you. And in my imagination, I’m sending you a casserole in order to help out a little.

jbhat

Amy says:

Wow – that is a lot to deal with. And on top of just meeting the every day needs of 3 children. You do it with such a positive attitude! Maybe knowing from your experience with Jasper that it does get better will help you through this time – which must be exhausting! But Ariana – they are so gorgeous – I love when you post pictures of them – I hope you will be able to always find time to photograph them. xo