On June 18th 2013, our soon to be 5 month old baby girl was diagnosed with Left Coronal Craniosynostosis. We were told she missed the window for having the smaller endoscopic surgery and that she would need a major reconstructive surgery of her skull around one year of age. We were determined to find a doctor who would still do the smaller surgery. This is documentation of our journey in hopes of helping others who are going through the same thing.
Alice had a followup appointment with Dr Magge today in DC. It was her first time seeing him since coming out of the helmet. It was a pretty horrible drive there in the rain and Alice was not herself....including in the room with Dr Magge. She's at the age where's she's scared of everything...and she DID NOT want anyone touching her besides her family.
Dr Magge thought she looked pretty good. He took head measurements and she had a little head growth since our last appt in June. He could also feel the bone bridging over the gap where he did the strip craniectomy. Which basically means its growing back together. He asked us if there were any concerns with her developmentally or her complaining of headaches or holding her head...and we said no. These things would be signs of pressure on her brain.
He told us that he would be following her for many years after surgery. He also said that just because she had surgery it doesn't mean she is cured of Craniosynostosis. It's something he will have to watch and monitor.
Praying that everything will be ok and that there will be plenty of room for her brain to grow. We will followup with him in 6 months.
waiting to see Dr Magge
September is Craniofacial acceptance month. Please share Alice's story to help us raise awareness. Thank you.
Going into Alice's surgery all I could think about was getting her the least invasive surgery option, the helmet didn't even cross my mind. But after the surgery was over and I could finally breathe again...the helmet came soon after. I will admit, I was a little sad at the fact that she had to wear it, but happy she could have the endoscopic option. I couldn't believe she had to wear it for a whole year, it seemed like an eternity. At the same time I knew how important the helmet was to her end result.
The feelings I had about the helmet in the beginning quickly subsided. It became part of her. At first it was weird seeing her in the helmet, but after a month or so it was very strange seeing her without it. Alice with the helmet on was our new norm. I honestly had anxiety when it was off, especially as she became mobile. It was truly a blessing during all of those falls when she first learned how to walk.
Love that we can still use her flowers and bows from her helmet
So getting used to the helmet being off has been alot different than I thought it would be. Initially I was excited that it was over...but soon after I started having this urge and want to put it back on her...it really was hard to NOT put it on her...I wanted it on. I was actually sad that it wasn't on. I was so used to her in it...her squishy little cheeks, that sweet flower velcrowed on her helmet...I even got used to the headbutts and velcrow burn lol....like I said that was our norm. Even Alice has had some adjusting to do...she was used to have that security of her helmet, she would bang her head on things...walk into things and she would never feel any pain. She's had MANY boo boos and bangs on her head in the two weeks she has had it off. It's like she didn't understand what the feeling of pain was on her head when she hit it. She would rub it and looked perplexed...like "What just happened?"
In the beginning it was hard getting used to holding her with it on, nursing her, rocking her, even kissing her cheek...the helmet definitely intruded on those things a bit...but I got used to it. We learned to work around it and it wasn't a big deal. I can't tell you how much I cherish those things now though...just holding her sweet little head, kissing it, rocking her...my goodness it's just the best feeling. It's like I am reliving the newborn/baby stage all over (except she doesn't stay as still lol)
18 months old
Honestly, the helmet is not an inconvenience at all to the baby. It really isn't...they adapt to it faster than we do. Alice even walks up to me and hands me the helmet now and wants it back on. So for those parents considering endoscopic surgery for their baby that may be reading this...please don't let the helmet deter you. One year in the helmet is a very short time compared to their life span. It seems like a long time at first but it will go by faster than you think. I seriously can't believe how fast it flew by! If I had to choose which surgery to have all over again, I wouldn't hesitate to go the endoscopic route.
We enjoyed decorating her helmet very much. We used her helmet to help spread awareness and I am continuing to spread awareness in any way I can.
We followup with Dr Magge at the beginning of September.
Wow...I can hardly register the emotions I am feeling today...
I have been going to Hanger every two weeks for a year now. At the beginning of June, Daniel, at Hanger, did a laser scan on Alice. Four weeks later he did another scan to see if there had been any change. At this point in helmet therapy change is minimal. So Dr Magge wanted to see the comparison to see if the helmet was doing any good at all.
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From the beginning of June to 4 weeks later, there had been only a half of a millimeter of change over her left coronal area (forehead area) Today compared to two weeks ago there was no change. So Daniel doesn't think the helmet is doing anything and she wasn't benefiting from it anymore. As he's saying these words I'm in disbelief...and wasn't sure if I was going to cry or jump up and down. I made it to the checkout counter and he brought all the girls there up to say goodbye to us. This place has been like a second home...yes of course I would miss seeing them. That has been our life for the past year. I couldn't believe it was over. A flood of memories of the last year and emotions came over me and I just lost it...couldn't hold the tears back.
The little hat they put on Alice when they scan her
The goal was for her to stay in the helmet until she is 18 months of age...she will be 18 months in 10 days. Pretty darn close. She has come so far! The tears I cried today were happy tears, grateful tears and tears of worry...I will always worry about her. The worry didn't stop after surgery, the worry hasn't stopped since. Everyday I would inspect her head wondering if everything is ok...worrying about the suture refusing or another suture refusing...and hoping the bone would grow back together as it should and that there won't be any gaps...looking at her eyes constantly, wondering if it will work itself out or if she'll need surgery on her eye...I mean the list just goes on and on. I can't even explain to you how emotional this whole ordeal has been. As a parent, you worry about your child anyways...but with Cranio it's a whole new level of worry. I am not naive...and am not going to pretend that the chance of a problems arising isn't there...but I know in my heart that we did the best thing we could for her. I am 100% positive that we made the right choice in choosing endoscopic surgery over CVR surgery. Everything else is in God's hands.
I hope and pray that one day every baby will be diagnosed early enough that their parents will also have the ability to choose which surgery they want for their child. That has been my goal from day one, raising awareness...and I will NOT stop trying to do so...
I cannot thank each and every one of you enough for your words of encouragement and prayers over the last year. Believe me, every single one has been noted and it means so much to me. I save and print everything so I can make a scrapbook for Alice about her cranio journey, so she will know about all the people who cared.
Thank you so much to Daniel at Hanger for being so wonderful and taking the time to make sure Alice's helmet was fitting correctly over the last year. I am so grateful!
When I first found out Alice had Craniosynostosis, I was a mess of course...I couldn't believe my little baby had something wrong with her. I thought that was a horrible feeling...but it doesn't even compare to the day my baby had to have surgery. It was the most heart wrenching and emotional thing I have ever been through. Handing my 5 month old baby over to strangers...and watching them walk down the hall with her...knowing that they were about to drill into my baby's skull...I can't even put into words how hard this was for me. It took every ounce of energy I had not to collapse..I have never been so scared. I cried like never have before...I couldn't stop shaking. I wanted to be with her...I wanted to hold her. Fears took over my thoughts. Would she make it through the surgery? Would she be the same sweet Alice afterwards? Being away from her for those few hours seemed like eternity. I literally ran back to recovery when they called us...and when I saw her there...white as a ghost, laying limp...I think I literally didn't breathe for a couple minutes. I knew she wouldn't look great...but she was so unresponsive, I knew she wasn't in the clear. Was she going to wake up?
After 5 long hours, she did. The strength she showed as a 5 month old baby, amazes me. My sweet girl had a whole drilled in her skull, a strip of her skull was removed...and she was smiling a day later...even with one eye swollen shut. Really?!
I am so amazed and proud at how far she has come. I am forever grateful that Alice had the opportunity to have the endoscopic procedure, no matter what her future holds, I know that it was the best choice for her.
My sweet Cranio Princess,
one year later
I know the worry that I feel in my heart everyday is something only a cranio parent will understand. I don't think I will ever stop worrying about her. I thank each and every one of you for your thoughts comments and prayers over the last year. I read through all of them recently and plan to print them out to show Alice one day...so she will know just how many people prayed and cared for her.
As May, June, July approach...I must admit I feel more emotional than I thought I would feel. I am in awe of how far we have come! Last May I remember getting the referral to a neurosurgeon...and then the beginning of June is when we saw the neurosurgeon for the first time...and heard the word Craniosynostosis for the first time. And then July...fighting insurance, waiting for what seemed like eternity and then getting the green light for surgery. It was such a whirl wind of events. I was a wreck, for sure...but I had more strength than I thought I did. I look back and wonder how I didn't just crumble and fall apart. A friend of mine, who I met through a cranio forum, who's child also had the same type of cranio and same surgery shared this with me. It has been so nice to talk to her through this journey...
This is so perfectly fitting for our cranio journey
We traveled to Washington DC today for Alice's followup with her neurosurgeon, Dr Magge. I think every parent who has a child with Craniosynostosis can relate to the nerves that come with each appointment. The construction and traffic on the way up didn't help the nerves at all.
My husband and I had some questions going into today's appointment...so we were eager to hear what Dr Magge had to say. Alice is on her 2nd helmet. She was in her first one just under 3 months...and has been in her current one for almost 8 months. The plan was for Alice to stay in her helmet until around 18 months of age. So with her being 16 months old now...we wondered how this would play out...whether she would need a 3rd helmet or not. See, when you first get a new helmet, they are somewhat large and need lots of adjusting to make them fit right...so in my opinion, you don't get alot of change in the beginning of each helmet...you notice the most improvement when they are snug, like Alice's is now...which is why Hanger was reluctant to order that 3rd helmet. Being as that we already owe Hanger right much money for the helmet she is in now, Dr Magge thought it would be silly to get a new costly helmet when she would only be in in for a month maybe. So....
Dr Magge said she will stay in this helmet until she outgrows it!!!! Which could possibly be earlier than 18 months...although we really want her to make it to 18 months to get as much improvement as possible before the end of helmet therapy.
Playing after a long car ride home
Dr Magge did tell us in the beginning that because Alice was on the older side when having the endoscopic surgery, that her results may not be as good as a younger baby. But we were willing to risk that...because we wanted this surgery for her. But Dr Magge seemed VERY pleased at how Alice looks and her results so far! We then starting discussing some pros and cons to both types treatment for Craniosynostosis (CVR and endoscopic) I told him my view point about how I see what endoscopic surgery does...and how I feel it stops Craniosynostosis in it's tracks...and stops any physical distortions. When the strip craniectomy is performed and that suture is released...the skull starts to grow as it should be. The nasal and mouth deviation that Alice had before the surgery, was noticeably improved within a short time. For Coronal babies...if you wait months for the larger CVR surgery, that is just more time for things to distort and worsen. Dr Magge did say that during CVR surgery he can correct the flatness that occurs on the forehead in Coronal babies but the nose deviation is something that cannot be corrected. Well... I am just fine with that!. Alice's forehead may be a little flat on one side for a little while but I am ok with that! If we avoided putting our sweet baby through a large reconstructive surgery of her skull, an ear to ear incision etc...and all she has is a flattened spot...so what?!? Although Endo babies continue to improve after helmet therapy and their brow is pushed out by sinuses. When her helmet is off, you can't even tell what she has been through. I couldn't be happier with our decision to FIGHT for this endoscopic surgery! So grateful for Dr Magge coming into out lives at the perfect time and so blessed to have our beautiful little Alice...she is my hero!
I also want to take time to thank a sweet friend of mine who recently hosted a fundraiser for Alice on Instagram to help us pay for her helmets. I can't thank you enough for your hard work and your sweet heart! (@auctionforAIC)
Below is a new awareness video I have been working VERY hard on to help other families and also awareness of Craniosynostosis and shed light on the endoscopic surgery option. It would mean the world to me if you would share this video with others...especially new mothers/fathers.
I couldn't sleep at all last night...I kept tossing and turning and WORRYING. Leading up to this appointment I was extremely nervous. Over the past few months there has been very minimal growth of Alice's head...which could be a sign of a problem like refusing of the left coronal suture. To add to my nerves...Alice's followup appointment had been moved due to a snow storm a couple weeks ago and was rescheduled at the hospital where Alice had surgery in downtown DC instead of the usual office we go to just outside of the city. As I tossed and turned last night I just kept thinking about her surgery and how scary it was for us...and returning to the hospital where she had the surgery just added to my uneasy feelings.
My husband, Alice and I took a day trip to DC...did a little sight seeing on the way in, some accidentally as we took wrong turns and ran into road work but we made it to the hospital with an hour to spare. Just enough time to grab lunch in the hospital cafeteria and take Alice in the hospital Atrium/lobby where I wished I could have taken her last time...but she was stuck in the hospital bed.
I knew she would love them!
They added new balloons since we were there in July for her surgery
So Dr Magge measured her head and took pictures. He asked about how she was doing developmentally and how we thought she looked. I told him about my concerns about Alice's eyes recently and that I had them checked. I have heard alot about babies with unicoronal (left or right coronal) having eye problems. He explained to me that most of those cases are babies that had CVR (reconstructive skull surgery). There are studies to support that babies that have the endoscopic surgery don't seem to be as affected since releasing the suture that is fused helps with the asymmetry and reduces the chances of eye problems. We told him we noticed very early on how quickly her nose and mouth asymmetry was corrected. He then asked us how we think her forehead/eyebrow looks. We told him that it without a doubt it has improved a great deal...but it was still flat looking. We knew going into this endoscopic surgery that her results may not be as good as a baby that had the procedure done at 3 months old but we were willing to risk the cosmetic aspect of it to avoid reconstructive skull surgery. He said he could feel that the bone was starting to fill back in where he did the craniectemy but that it wouldn't affect her progress. The plan is to keep Alice in her helmet until she is 18 months old, although he will followup and keep an eye on her and could possibly extend it depending on how's she is doing. As Alice continues growing...her brain will push her skull outward and continue to push her affected side outward. With time, her skull will not appear as flat and her brow bone will eventually come out, even though it is recessed now. There isn't a medical need to do further surgery on Alice...it would only be cosmetic at this point, unless something changes.We won't be considering another surgery unless Dr Magge thinks she NEEDS it. The reason her head has not been growing dramatically is just because she is in the lower percentile for growth...her head is in the 25th percentile. She has a small head but it is growing gradually just like the rest of her. We call her our little runt :)
My point to this post is not to only let my friends and family know how the appointment went but to also let those of you who have stumbled across this blog to know how happy we are that we chose endoscopic surgery for our child. There are so many posts I ran across when I did my research in the beginning that said babies who have the endoscopic surgery are more likely to have to have more surgery....well, this is not true in most cases. Endoscopic surgery literally stops Craniosynostosis in it's tracks...when your baby's affected suture is released during surgery, amazing things begin to happen. We saw almost instant results with Alice's facial asymmetry....and then the helmet started to do it's magic. Some people may look at the helmet as an inconvenience to them...but it's not to your baby! Your baby adapts amazingly well...and it becomes part of them....and IT WORKS! Parents adapt too...the helmet becomes the new normal after a few months. My husband and I always talk about how different she looks without it because we are so used to her with it on...we actually get nervous when it is off while we clean it. It definitely comes in handy for a baby learning to walk that falls constantly :) Please consider this option for your child if you are given the opportunity. It is truly amazing how far our sweet Alice has come!
Thank you so much to my friends and family and even complete strangers who sent positive vibes and prayers our way as this nervous Mommy awaited this appointment. So happy that Dr Magge helped to ease my fears...I feel so much better! One thing that will never change though...how much you worry about your baby after they have been diagnosed Craniosynostosis...that fear is always there...
Just 8 months into helmet therapy! She has improved so much!
It is unimaginable to me that some doctors don't look out for the best interest in their patients....why? I don't know...because it is so routine for them, because of money, or maybe some of them just don't genuinely care like we would like to hope. Well, I guess most doctors expect the parents to just take their word and go with whatever they say...but not this mom!
A little something I created to raise awareness. It's a picture of Alice's foot with a bracelet
my older daughter made for her. I love this quote...it seemed very fitting.
As a parent you put your trust into this doctor you are seeing and trust their judgement...but please don't take the word and opinion from the first opinion you get. That, to me, is the biggest mistake as a parent you could make.. Why jump into a surgery for your child based on one person's opinion? Why not get additional opinions? You owe it to your child to explore other opinions of qualified doctors who can treat your baby.You are your child's advocate, their voice. If I had taken the first doctor's opinion and not pushed for a second opinion..my child's treatment and outcome would have been DRAMATICALLY different.
You have to remember that some doctors look at CVR (the open surgery) as such a routine thing, it's no big deal to them...it's not their child! You would hope as a decent human being that they would look out for your child...and if your child wasn't able to get endoscopic surgery based on their typical endoscopic window, that they would say..." Hey I know a Dr _____ will do the endoscopic surgery past 3 months of age" ...but no, that is just not the case, as you would expect. You have to research and find that out for yourself.
My intentions from the start were to get my daughter the less invasive treatment she needed and not settling for the first opinion...I knew I would do whatever I could to avoid reconstructive skull surgery for my child by fighting for endoscopic. CVR may seem routine for some doctors, but not to the parents going through this. I started this blog and did the news story (http://www.youtube.com/watch?v=NKSUElWbzfM) so that awareness would be raised about craniosynostosis...and so others would know that there are some doctors out there that offer endoscopic surgery up to 6 months of age...which I would have NEVER known if I had not researched it myself.
Parents...PLEASE get many opinions.You owe it to your child to get many opinions and go with the doctor that you feel is right in your heart...not the one that is closest or the one you first saw...don't take NO for an answer. You will run into road blocks, you will feel defeated...but I promise you, there will be such a huge reward for fighting for your child. I have never been more proud of myself than I was with how I handled Alice's journey. I knew what I wanted for my baby and I made it happen...no it wasn't easy but it was worth it. I am so grateful for all the people that were helpful along the way and for everyone's support.
From the moment you hear that your child is being referred to a specialist, specifically a neurosurgeon, fear comes over you. The last thing you want as a parent is to see your child go through surgery or be in pain...and you naturally want to protect them from that...until your realize you can't. This birth defect is not something that you can bypass....surgery isn't an option for the majority cases of Craniosynostosis. Then once you finally accept your child has to have surgery then you have the anticipation of waiting for surgery day...even on that day I battled a mix of emotions. I just wanted to pick her up and leave..I didn't want her to have the surgery. I think that was the hardest part for me...accepting that this had to happen and I had to trust complete strangers with my child. After you get through the surgery and recovery you then live with that fear of more problems coming up. In our situation our daughter had endoscopic surgery for left coronal and now is in helmet therapy. I constantly inspect her head and examine her physical features fearing the worst...that another suture has fused or that she will need another surgery...it consumes me at times.
Alice's skull (left) before surgery compared to a normal skull of a newborn
Last week Alice had a helmet adjustment appointment. I already had some concerns from two weeks prior but was hoping I would be relieved of my worries this time...but I wasn't . Alice's head has not had hardly any growth in 4 weeks time...which can sometimes be a big concern. I immediately went into panic mode thinking the worst. She could possibly need more surgery, my worst fear. I emailed Dr Magge as soon as I could and expressed my concerns. I also vented to a couple friends...one who had been through the same surgery with her son, and one who had been supportive through Alice's journey. They both tried to calm me down and were very sweet and reassuring. One friend said "Remember you have done everything you can do right now. Gosh forbid Cheryl she has to have a larger operation at some point (prayerfully that won't happen but if it were needed) you also have to remember you have helped delay it by having the less invasive one months ago. Had you waited till she was a year old to do the big surgery we can only just imagine how it would have effected her sweet face and possibly motor or cognitive abilities. Keep the faith, pray and ask God repeatedly to take away any fear that is creeping in" Her words definitely helped me realize that I have done everything I can for her...I fought hard for the less invasive endoscopic surgery and even traveled out of town so that she could have that surgery. I have no regrets on my decision for endoscopic surgery for my child. I feel like it "stopped Cranio in it's tracks" as my other friend said...and helped her in the long run, more surgery or not. I have done everything in my power to help her...it is out of my hands and in God's hands now.
Alice, one year ago
Alice's first birthday is tomorrow...it blows my mind that it has been a year. When I reflect back on just how much she has been through in her short year of life, it makes me emotional. What a strong girl I have. When I brought her home from the hospital she was somewhat fussy at first...and for the first several weeks. For some reason I started singing her the "Don't Worry, Be Happy" song (from the late 80's, remember?) It seemed to soothe her so I continued to sing it to her over and over for the next few months. So, I am going to take my own advice and try not to worry and to be happy. Easier said than done...i think I will always worry about her...but hopefully we will get some reassurance when we followup with her neurosurgeon in a month. Please keep Alice in your prayers. Happy 1st Birthday to our sweet Alice!!!
