Deciding Which Surgery To do…or Eeny Meeny Miny Moe

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Early this week we met with Nora’s surgeon to discuss a new surgical option he thought of after seeing her CT scans. To give you a little more background information, Nora has been involved in a research study through the Children’s Spine Foundation since her diagnosis. Our surgeon is also involved in a continuous research group with EOS and Congenital Scoliosis focused surgeons across the US and around the world. He reached out to this group and shared Nora’s CT scans, x-rays etc to get their input on what surgery to do. He said he reached out to 14 of these surgeons, some of these surgeons are considered the top surgeons in their field in the country or even world! I thought to myself, this is great! We are getting the benefit of 14 different ‘second opinions’ without actually having to step foot in their hospitals. Until the next words out of his mouth were, “there’s no real consensus on what surgery to do. They all have different opinions and reasons behind them”

What? How is this possible? How is this going to make deciding any easier?

So here it goes, here are the details many of you have asked for, the details on each surgery option we have. I hope the visual below helps as a reference when I’m describing these.

Anatomy of spine

Double Hemi Vertebra Excision:
We’ve thought for a long time now that this was going to be the surgical option that made the most sense. We’ve been preparing ourselves for this one in our heads. Nora has two hemi vertebras in a row at T-10 and T-11, just that extra one, right next to the other one, makes her case more complex than if she only had one there. If she had only one hemi, the best option would be a single hemi excision and small fusion, a very long and risky surgery in and of itself. The double excision of course adds to the complexity and the risks.

What this surgery would mean is he would go in and remove both of those odd shaped vertebra. If it were only a single they would close down the vertebra above and below the one they remove and tighten it up and fuse it there from just the back part of vertebra not touching the front side of the vertebra. They can’t do that with two hemi’s in a row, at least not hers. What they would have to do is remove both, and do a fusion across the now open space on the front side of the vertebra as well as the back side but not cinching it down bone-to bone.  They can’t cinch two openings down in part because of the spinal cord.  It would be “open”. This “open” space would be have to be supported with a metal mesh cage. It would be fixated to the front and back of the three vertebra above and three below to ensure its stability, essentially fusing those above and below all the way around. This cage would be under the skin but would stick out some and you would see it.

hemi excision steps

The Cons:
– This surgery takes 8 or so hours
– It has high neurological risks – yes, just what you are thinking, damage to the spinal cord.
– Significant blood loss can occur in this surgery resulting in the need for blood transfusions
– Infection rates from surgeries that require more instrumentation are high
– Longer hospital stay post-op
– The curve could still progress as she grows requiring another surgery
– Compensatory curves could develop. These are curves that develop as a result of the initial curve below. Almost as if the pressure from the first curve would cause a secondary curve
– This surgery is considered a very big surgery with high risks. This is the biggest surgery with the highest surgical risks we have considered.
– Overall height loss of about 2 inches

The Pros:
– It has the highest possibility of being a “one and done” surgery. Meaning we wouldn’t have to do another surgery down the road because this one would be the ‘strongest’ almost.
– Significantly smaller rib hump
– Initially before our consult we expected this surgery to give us the best results in terms of correction, meaning it would straighten her spine the most as well. However, with the new information from the CT scan our surgeon ran all this though a simulation program and it didn’t project as much correction as we had anticipated

The Short Fusion
The CT scan gave a much better picture than the x-ray in terms of exactly what her abnormal vertebra look like. For a long time, one looked the most significant and we were just kind of waiting to see what the other one would do. Over time, it began to present itself as just as much of a problem as the first. The CT showed they are both about the exact same size and shape. The idea of this surgery would be to actually leave them in but carve out small horizontal semi-wedged sections of a certain part of each vertebra, almost like shaving it down, so he can pull it tighter to get more correction. He would then do a short fusion that would only involve putting screws in on the back side of the vertebra and not touching the front side.  The screws/fusion would encompass the two healthy vertebra above the hemis and the two healthy vertebra below the hemis. Screws would be placed on both the back left and back right side of the vertebrae, but again not on the front side.

short fusion example

The Cons:
– The curve could continue to progress because she would only be fused on the back side of her spine. So the front side of the vertrbra could grow and cause the spine to curve.  She would then require another surgery or surgeries. Technically speaking , her odds of this happening are higher here than if we were to do a double hemi excision.
– The curve could not only progress but more rotation could occur as well. She would then require another surgery or surgeries. Again, her odds of this happening are higher here than if we were to do a double hemi excision. Rotation has a very slim chance of happening in the double hemi excision
– She will still have a rib hump, it will be smaller but not as small as it would be from the double hemi excision
– Compensatory curves could develop
– Overall height loss of about two inches
– Higher chance of needing subsequent surgery than the double or single hemi excisions

The Pros:
– This surgery takes about half the time of the double hemi excision
– The neurological risks are significantly less
– Blood loss is significantly less. A transfusion would most likely not be needed
– Shorter hospital stay post-op
– He thinks he will be able to get pretty good correction from this surgery, possibly the same as he would from the double hemi excision maybe slightly more.
– This surgery is less invasive and is considered to have much lower risks

Convex Short Segment Instrumentation
A fancy name for what is the most conservative approach of all of surgery options. This surgery also involves leaving the abnormal vertebras in place and placing screws in and fusing only one side, the right side and also the back side, of the vertebra. Screws would be placed only on that one side one or two levels above and below the abnormally shaped vertebra. The idea here is that the screws on one side would act as a tether almost and pull the spine straight and allow the left side of the spine to be free from hardware and would have the ability to still grow.

The Cons:
– This surgery is considered relatively new so there isn’t any long term data available
– This surgery has a high failure rate. About 50% of the time it doesn’t work and it fails quickly
– This would probably only provide about 30-35% correction of her spine
– The curve could not only progress but more rotation could occur as well. She would then require another surgery or surgeries. Again, her odds of this happening are higher here than the other two options. The behavior of the curve after this procedure is just unpredictable
– She will still have a rib hump
– Compensatory curves cold still develop and probably have a slightly higher chance of happening with this method
– Overall height loss of about 2 inches

The Pros:
– This surgery is the most conservative so it’s the ‘easiest’
– It has the lowest rneurological risk
– It’s a short surgery only taking 2 hours
– Little blood loss is expected
– Fastest recovery time of all options
– Placing the screws in just one side could stop the curve progression but it could also result in spontaneous correction all on its own but knowing if that would happen is impossible to predict
– Doing this surgery doesn’t “burn any bridges” so to speak if it does fail and other surgeries are required.

Single Hemi Vertebra Excision – Taking one out and leaving one in
This surgery would involve taking one hemi out and leaving one in and doing a fusion of both the front, back and sides of the hemi that’s being left in.  He would fuse the two vertebra above and below the hemi left inside. There would be no need for the mesh cage to be used like in the double hemi excision. The idea here is that taking one out would provide better correction than the short fusion surgery but how much is unknown.

The Cons:
– This is a long surgery, 6 hours or so
– More blood loss, possible need for a transfusion
– It has also has high neurological risks
– Infection rate is higher
– Longer hospital stay post-op
– The curve could still progress as she grows requiring another surgery or surgeries
– Compensatory curves could develop
– In ranking order, this surgery has the second highest overall risks associated with it.
– Overall height loss of about 2 inches

The Pros:
– It has a good possibility of being a “one and done” surgery.
– Significantly smaller rib hump
– Initially before our consult we expected this surgery to give us the good results in terms of correction. However, with the new information from the CT scan our surgeon ran all this though a simulation program and it didn’t project as much correction as we had anticipated

So the overall cons from all of these are: they are all still major surgeries, she will never be completely straight, she will always have a rib hump and she will lose about 2 inches in trunk or overall height with any of these options. There is no solution that addresses all of these things.

If there was any additional tool a pediatric spine surgeon would want in their arsenal I have to believe it would be the crystal ball. The unpredictable nature of the growing spine is just that…. unpredictable and makes their job difficult.

In all these methods, there are unknowns of what will happen down the road, some have a bit better predictions but overall we just don’t know how her body will respond, what will happen during major growth periods. There is no one right answer here.  That has probably been the hardest factor for me to accept and understand. Modern medicine has advanced so much. For a very long time, in my mind, it seemed unacceptable to know so little of what will happen in the future after these surgeries. I understand this and have accepted this better now, but its has taken time. I think because I’ve been so fearful of making a wrong decision that will affect our child’s future. I struggle with dealing with fears of future from many things in life, not just this. But that’s just it, there are no guarantees to anything in life. Living with that fear will destroy you.

I’m happy to say Matt and I have made a decision on what surgery to do and are at peace with our choice. Of course we are still nervous and afraid but we are ready to focus on this next step and will we try not worry about the future’s unknowns.

For those of you who are intimately involved in Congenital Scoliosis or Early Onset Scoliosis can you guess what surgery we decided on? What would you choose?

The Decision Is Harder Than The Incision

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It was late March of this year when we decided to schedule Nora’s big surgery.  We knew she would be big enough and in the preferred age range for the surgery, which is about 3-5 years old. I know what you’re thinking. You’re thinking that’s still a big time frame, why not prolong it and wait till she’s closer to 5 years old? I struggle with this one too and go back and forth in my mind…should we just wait a little longer? By nature, I’m a great procrastinator but I’m also a bit of a perfectionist; a heck of a combo that always keeps my life entertaining and has made this journey interesting to say the least. But here’s how we came to this decision: I asked our surgeon if there was any benefit to waiting till she’s closer to five years old rather than doing it at three years old. He said no, she’s big enough and that doing it at three  does not have any disadvantages over waiting till she is closer to five.  He added, there’s no easy answer. If we weren’t ready we could wait. However, we would need to keep casting her till we were ready. It was those two factors that really made the choice seem a little easier.

big decsion

The fact is Nora has already been under anesthesia ten times. All before the age of three. There are studies starting to come out questioning the long term effects of anesthesia on young children. Of course nothing in these studies is concrete; they more or less say ‘we need to study this further’, but they are beginning to point to possible cognitive and behavior issues down the road. Plus there are always risks with anesthesia in general. And on top of that Nora has a horrendous time coming out of anesthesia. Lastly, cast life isn’t always easy, for us it has gotten harder as she got older. I truly admire the parents of kids who are really in it for a long haul and have years of casting ahead of them with no promises and still a strong likelihood of surgery down the road. That’s a tough tough road.

So Matt and I talked about it for maybe 10 minutes and decided yes, let’s schedule it for five months from now. Five months was a long ways off. And at this point I had taught myself to only think in the present, what’s right in from of me. We lived cast-to-cast, day-to-day. But NOW, five months is suddenly right in front of me.

The thought process I had going into picking a date for her surgery is probably a little crazy and neurotic. I knew I wanted the summer to be cast free and full of fun and freedom, which our surgeon was on board with as well.  I also knew early summer was a very busy time for our surgeon because so many school aged kids who need surgery would be having them then so they wouldn’t miss school or very much school.  So I didn’t want to schedule it in June or July when, in my mind, he’s doing back-to-back surgeries all day long, day after day and he’s probably pretty tired. This isn’t a quick two-three hour surgery, his assistant told me it will be 7-8 hours. I want to make sure he’s well rested and fresh and energized.  Crazy thinking I know, this is his job and he’s not going to schedule a surgery when he’s not able to perform it at his best. But still. So when his medical assistant told me he was going to be vacation for a week in mid-August, I jumped on the August 25th date. It would be his second day back from vacation. I thought, this was perfect, he’ll be well rested and relaxed after spending quality time with his family.

But then even more crazy set in…and I started thinking, what kind of vacation is he going on? What if it’s an adventurist vacation of rock climbing and hiking 14ers and he actually comes back from his vacation tired and sore from doing things he isn’t used to doing. Or what if it’s out of the country somewhere and he drinks the local water and gets a delayed illness and it hits him half way through the surgery. Then I started thinking this is a bad idea…I need to reschedule.  Really just procrastinating.

I shared this irrational and wacky thinking with just two people, my congenital scoliosis mom friend who’s daughter is close to Nora’s age and had her surgery already, and my husband, Matt. My mom-friend was reassuring that I wasn’t, in fact, crazy. She told me she had many “what-if’s” too before her daughter’s surgery. She worried about her surgeon getting in a fight with his wife the night before or not getting a good night’s sleep and being off his game the next day, or what if his kids were sick and he was up all night with them and suddenly comes down with an illness as well. Now when I told Matt what I was thinking, he stopped and said, “oh my gosh that’s what really goes on in your head?” he laughed and shook his head and said, “How do you even come up with this stuff?” I laughed too, I know I’m nutty.

Recently, our surgeon told me he reads my blog occasionally. I’m sure he’s just going to love this post. It could very well change his opinion of me. Or maybe I’ll be lucky and it will make him think twice about bungee jumping on his vacation.

So now we are only two months away from her surgery and we don’t even know yet exactly what the surgery will be or what it will look like. We have ideas but we haven’t had the big sit down yet with the surgeon to figure this out. I’m starting to get antsy and worried again. There’s so much going on in our lives right now that has me dealing with more stress than I’m used to and adding the surgery concerns makes everything a little intense to say the least. I started reading published studies and papers again on surgical options, and the risks and complications are weighing heavy on my mind.  I know I should just stop but I can’t.

So once again I want to push this back too and not deal with having to make another decision. Yet every time I touch my daughter’s back I’m reminded how we can’t turn away or push this off.  A wise woman in one of my support groups said, “the decision is harder than the incision.” Considering how hard these decisions have been and all the second guessing that comes with it, I sure hope she’s right.

decisions_mid

What Not to Say to a Parent with a Child with EOS or Congenital Scoliosis

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One of the things I hear often, in the support groups I’m a part of for congenital scoliosis and EOS scoliosis, is how thankful people are for the support and understanding these groups provide because their own family and friends just do not understand the same way.  Thankfully, most family and friends really do want to be supportive and are well meaning, but often their attempts to be sympathetic, supportive, or encouraging end up doing the opposite: shutting down communication and making a parent feel worse. My husband and I have felt this too. This comes up so much in the groups, naturally, it prompted me to write this entry. So I asked parents to share things that are said that they wish people would not say.  There was a long list that came through but these below were the most frequent. (If you have child with one of these types of scoliosis, you might want to share this with important people in your life, especially if you are new to the diagnosis.)

what-not-to-say

“WHAT NOT TO SAY TO A PARENT WITH A CHILD WITH CONGENITAL SCOLIOSIS OR EARLY ONSET INFANTILE SCOLIOSIS”

“I know someone with scoliosis” or even the “I know someone with scoliosis and they turned out fine” and “Oh my neighbor’s 16 year old daughter has scoliosis, she practices yoga to help” Unless those statements includes the words “infantile scoliosis” or “congenital scoliosis” statements like these should not be made. Infantile, Early Onset or Congenital Scoliosis are so very very fundamentally different.  They can be much more dangerous and potentially life threatening.  They can not be compared to the scoliosis you are probably already familiar with.  Even the treatment for these types are significantly different.  The young growing spine is very different than that of a mature or almost mature spine.  And if you are looking at congenital scoliosis, that means there are bones in the spine that never developed properly and they never will.

“At least you caught it early while she’s so young” – This seems like the right thing to say and it’s a little tricky.  Catching it early means this is a different type of scoliosis and has a very different treatment plan that can be much more complex. No matter how successful treatment is for our kids they will have to be monitored for their entire childhood and that’s just for those who have responded well to treatment. Imagine what it’s like for those who do not respond well and have complex cases.

“Have you looked into chiropractic medicine, a chiropractor can help and even fix scoliosis” I’ll be honest, this one infuriates me. A chiropractor cannot fix scoliosis! Sadly, there are way too many chiropractors out there who will tell you that they can, in fact, fix scoliosis. What’s even sadder, there are way too many chiropractors who have no real idea what infantile scoliosis is or what congenital scoliosis is.  A chiropractor can help alleviate some discomfort for adults and adolescents with mild to slightly moderate curves, but that’s it.  It can be dangerous to have a chiropractor manipulate the spine of a child with congenital scoliosis, where bones that aren’t formed properly.  Chiropractors can be wonderful care providers for for many other things, but not infantile or congenital scoliosis.

“God only gives people what they can handle” – Unfortunately many people really can not handle the stress of really complex medical cases. Just watch the news to see all the people who do NOT handle their medically complex child well  to see that this isn’t true. Most of us rise to the challenge because we have to, not from any per-existing virtue.

“That curve doesn’t look too bad” – Because you are a medical expert you know what constitutes a bad curve from a good one? What is a good curve anyway?  Sure a curve might not “look” bad but that’s what’s deceiving, that curve if not treated quickly and properly could grow rapidly — just as fast as a young infant grows. We know you mean well, but it belittles the seriousness of the journey and situation.

“I know just how you feel.” Unless you have a child with one of these types of scoliosis you simply do not know.  Please do not think you do.

“At least there is a surgery for that. I hear about people getting spinal fusions all the time and they are just fine” – First off, spinal fusion surgery with rods is a very difficult and complex surgery. Surgeons will often tell you the recovery for a complex spinal fusion is far more difficult than the recovery from open heart surgery. Secondly, you can’t just fuse the entire spine of an infant or toddler. Once you fuse you stop growth at that point of fusion, so that spine would not grow anymore in the areas fused and thus the chest cavity would not grow either, therefore the lungs and heart wouldn’t develop properly.  A infant’s spine that is completely fused would be a death sentence. So then you might say growing rods makes sense, again a very complex surgery that requires multiple surgeries over years and by nature have a 90% complication rate. The physical, emotional trauma of repeated surgeries on little ones is not something to take lightly. Keep in mind a child also has to be ‘big’ enough for growth rods too. As advanced as technology is they still have not been able to create very small instrumentation that works with young, small and soft bones.  Yes, this is the only option for many at some point but this is far from ideal.

“Everything is going to be all right. I just know it” This is often a statement made in hopes of making someone feel better but the reality is you have no way of knowing if it will be alright or not and such a statement ends up sounding like an empty platitude — It simply doesn’t make a parent feel better.

“He will outgrow it” – If we took that approach we would be in real big trouble.

“At least it’s not cancer or something serious”  -It might seem like a good thing to say when you are unsure of what to say, but this is actually a very condescending remark and can only add to a parent’s feelings of others not understanding.  Avoid measuring the stress, anxiety, suffering, or discomfort. (And knowing that things could be worse is hardly cheerful news.)

“Have you tried ____ exercise, physical therapy, acupuncture, essential oils, super magic moon crystals, this weird new therapy that I heard about one time but know nothing about? –  We parents don’t want to defend ourselves to you on how we have already tried this or that or don’t trust the efficacy of a certain treatment, especially if your evidence is only anecdotal.

“Did this happen because of something you did in your pregnancy” – Asking whether a parent’s pregnancy, genetics, diet or what-have-you led to this is actually rather insensitive.  Blame is the last thing we need.  Just to be clear, the answer to these are NO!

“Well he runs and walks and looks normal. It’s just scoliosis; I’m not sure what the big deal is? – There are many diseases out there where people look ‘normal’ and aren’t normal. Just because our kids hit all their milestones and aren’t laid up in bed in pain doesn’t mean this isn’t serious or a difficult road to travel.

“It’s great you can just go to the doctor’s office and have a cast applied so easily” – Having a Mehta/EDF cast applied is nothing at all like having a cast applied for your broken arm. Mehta casts are applied in the OR, under general anesthesia, full intubation, with an entire team of doctors and specialists. Our kids are placed into a complex and very precise form of traction to straighten the spine and address the rotation of the spine. Then the cast is applied to the entire torso, which isn’t easy, it needs to be tight but not too tight. It’s crucial it’s done precisely to protect the chest wall, respiratory function, organ function and more. I could go on and on….this is a pretty big ordeal!

“Why don’t you just get the surgery already” –It’s insulting when you think surgery is the best and easiest option.

“They are doing such wonderful things these days, technology is much better today than 20 years ago.” I’ve made the mistake of saying this at times too but even if the prognosis is good, what the parents and child is going through is far from wonderful and this can undermine those feelings.

“So she’s in a cast, she can still have a bath and swim right? You can take that off” – I think every single one of us who have a child in a Mehta/EDF cast has heard this one. It baffles us all and drives us crazy.  It’s a cast, not a brace it doesn’t come off unless you cut it off. Please remember this is a CAST not a brace.

“Why can’t she wear a brace like other girls” – This isn’t mild or moderate adolescent scoliosis. This is a whole other animal. Trust us, if a brace was going to do it and be our best option, we’d all have our kids in braces.

“Why are you traveling so far to see a surgeon, why can’t you just see the local orthopedic surgeon, I’ve heard he treats scoliosis?” – These are very rare forms of scoliosis that generally require a surgeon with vast experience and expertise in these areas. Sadly, there are plenty of great orthopedic surgeons who treat scoliosis for adolescents but do not have the understanding, experience or knowledge for these cases. It would be great if we could just go across town. This is another reason why I wish EOS and Congenital had entirely different names that did not include the word “scoliosis” – which I talk about in another blog here.

“I know your 2 ½ year old is in one of those casts, but he will be alright coming over to a pool party where other kids will be swimming right? He understands he can’t get in and will be fine watching, right? I was downright shocked how many parents in our support group mentioned something along these lines being said. This is particularly cruel. We understand our kids cannot attend all parties and functions because of “cast life” and we don’t expect you to change your plans by any means. What we do expect is  respectfulness and when there are functions where our kids will be there no matter what, do not ask our kids to be mere spectators. This would be hard for an adult to even do, imagine how hard this can be for children who are already going through so much.

Here Are the Things We Wish People Would Say

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When we’re frightened or stressed about our children’s health, advice is often the last thing we want from friends and family. What’s more important is simply being listened to—and knowing that we’re being heard. Try, “Tell me what’s going on, help me understand the differences between infantile scoliosis or congenital scoliosis and adolescent scoliosis, so I can understand your journey just a little better?

Instead of saying “I know how you feel”, a better approach is to ask something like, “How are your mood and spirits holding up through this?” If the person you’re concerned about is anxious or sad, this gives him a chance to tell you how he feels, which can be a big relief to someone who’s trying to pretend he’s doing just fine.

“Educate me, what does casting do that bracing doesn’t, I want to be able to explain this properly to others as well”

Castings, surgeries, even appointments with our surgeons can be far away and require a lot of travel, many have to take air travel to see the right doctors.  Ask, “when is your next appointment? I’d like to help by doing ____?  Many parents have other children that need to be cared for while we are gone. Offer to help with the kids, the dog, make a meal for when the family returns.  Simple things like this can help in more ways than you can know.

Keep in mind that every person is different, and every relationship is different. When in doubt, tread lightly, or even ask how to proceed: “I am here for you, but I’m not sure how to discuss things. Tell me about this condition, what you are going through now, and what you prefer and need.”

There’s a big difference between pity and empathy. And sometimes, you don’t have to say anything. Just being there is enough.

Do you have anything else you wish people didn’t ask? Are there other things you wish people would ask?

The Stages of Grief: And My Child’s Rare Medical Diagnosis

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There are certain days in our lives we never forget… graduation, getting your driver’s license, your wedding day, and your children’s births. There are also horrible days we will never forget, where you were when 9/11 happened. The day Nora had her first x-ray and we received her diagnosis is a day I will never forget. I’ve written about that day before here and how the fear of the unknown shook me to the core. I remember the phone call with her primary care physician, who gave me the diagnosis and outlined what little she knew about congenital scoliosis and told us surgery or surgeries were in our daughter’s future and reiterated just how rare it was. I remember standing there, in my kitchen, taking that call and trying to hold it together and failing miserably. I was in complete shock. I remember telling my husband I needed to go out for a walk afterwards and I just ran, I ran till I couldn’t run anymore and broke down crying in front of a neighbors house. I’ll never forget that day.

The moment our children are first placed in our arms we can’t help but think of their futures. Naturally, we envision prefect, happy, healthy futures. Nora was just five month old. Five months. It wasn’t fair those hopes and dreams were being questioned already. When I got my wits about myself there were two thoughts that went through my mind. One it was a mistake. And two, I was begging God to make it a mistake and give me some horrible disease or something, anything.…just not her.

This was the beginning of my travels through the stages of grief. I believe certain diagnosis’s propel parents to experience the same stages of grief and loss that they experience when losing a loved one. But it’s different. Different in that we jump around the stages not in any particular order and revisit stages we have already been through and thought we were finished with.

grief

I went through all the stages of grief not that long before this. I’ve never really talked about this openly till now. It took Matt and me some time before we had Nora. We had gone through a number of miscarriages and my pregnancy with Nora was difficult in ways. At just 9 weeks of pregnancy, after a trip to the OR because of a threatened miscarriage, I was told I had a 50/50 shot of the pregnancy making it through the situation I was in. I was a high risk pregnancy from there on out. Within a couple of weeks, I also found out my step-dad, who was a big part of my life just like my dad, was diagnosed with stage 4 lung cancer and it was bad. I bargained and pleaded with God to let him be ok, I didn’t want to lose him. I said to God, “I can go through another miscarriage if Steve can be ok. I’ll have other opportunities for a baby just please let Steve be ok.” I wanted to take on more hardship to keep my stepdad. I was bargaining. But I didn’t know what bargaining was in terms of dealing with grief. But soon I was changing my mind. I begged God for both. I wanted that baby so badly and deep down I knew this pregnancy was different. I wanted Steve to be there when this baby was born. Was I asking so much to want both?

This time in my life and the thoughts that I had I still struggle with to this day. I think I always will. I feel guilty and terrible for both of the thoughts that I had, and in ways I will never fully understand it or forgive myself for my thinking. I’ve shared these thoughts with only a few people in my life, until now.

My stepdad passed away just 12 weeks from his diagnosis. I’m still angry Steve never got to meet Nora.

After Nora’s diagnosis, I was facing these stages of mourning and loss all over again but in a completely different way. I was in denial and bargaining in the beginning of course one of the stages is Depression. Thankfully it was hard to fall into a deep depression when I had this otherwise healthy, happy, beautiful, and funny little baby around. Her laugh, her face, her everything was a reminder to preserver and also to just enjoy life with baby.

Pushing the depression part of it aside quickly opened the door for anger to come on in. This stage is one I’ve visited often. In the beginning when anger visited, I first turned my anger at God, wondering why he would allow this sweet innocent baby to face all this. Then I was mad at myself. This somehow had to be my fault. Something I did wrong in my pregnancy (which is not true at all, this just occurs) something I did wrong in life and was being punished.

I didn’t let myself stay in anger or depression long, I jumped into testing pretty quickly. I became obsessed with reading everything I could. I found ways to get my hands on published studies on read them all. It would take me forever to get through some of these studies topictures of reading understand it all. I couldn’t do it without a medical dictionary too. I have a five inch three ring binder busting at the seams filled with studies, information, statistics, everything I can find. I’ve received quite as few interesting looks from surgeons when I’ve opened that puppy up in a consultation. I was really thorough in the testing – seeking realistic solutions stage. I’ve learned the hard part is defining what a realistic solution is to a complex, rare and unique spinal condition.

After some time I thought I had accepted it all. I wasn’t worrying and reading all I could constantly anymore. I thought I had handed it all over to God. And I did in many ways but I also was still holding onto that denial.

We spent months after her initial diagnosis just watching her spine and waiting to see how things would go. We had discussed the possibility of needing to cast her but there was some uncertainly in how her spine would progress and maybe we wouldn’t need to cast and her spine would hold decently steady till she was old enough for surgery. I held on to that like it was a five hundred dollar bill. I was in complete denial again. By time her one year birthday rolled around I knew her curve had increased significantly but I was in denial that it really meant anything. So much so that I told Matt he didn’t need to come to her routine x-ray and check up, we would be fine. It would be no different than the previous ones. Looking back I really don’t know how I was so oblivious. Of course it was that appointment, where I was by myself; I learned we had to start casting…. Hello again Anger.

In the time since we started casting, coming up on two years this summer, I’ve really come to a new place of acceptance. Acceptance unlike anything I could have envisioned two and a half years ago when we got this diagnosis. I truly believe this happened for a reason, a good reason as crazy as that sounds. I’m not only a different person since becoming a mother; I’m a different person since my daughter’s diagnosis. This has changed a part of my life, one part of my purpose in life. I will forever be an advocate, supporter, educator, fundraiser, and more for this rare and complex disease.

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Last week I thought I had mastered all the stages of grief.  I have actually been in a rather peaceful and positive place despite all the unknowns and recent setbacks. But denial and anger reared their ugly heads again and caught me off guard. It was after talking with a couple other congenital scoliosis moms and I realized, or remembered is a better way of putting it, that even after surgery or surgeries my daughter’s spine has a very slim chance of ever being straight. Ever. She will most likely always have a significant curve. I spent a couple days last week a little depressed and angered by this reality I had chosen to block out for some time.

But that’s the thing, we have choices. I could choose to continue to be angered, all the time. Or I could choose to accept this situation, do the very best we can in terms of seeking out medical treatment and learning as much as we can, then leaving it and entrusting it in God’s hands so we can focus on finding and exploiting the positive silver linings. I also have to remind myself that we are still very very lucky, she’s a happy and otherwise healthy and thriving toddler. Things could be so much worse. I see it every day, we all see it everyday.  Sometimes that makes me feel guilty too. Guilty for any of these feelings I have, knowing full well there are others who endure so much more.

This recent visit from denial and anger made me realize, this is a life long journey so why wouldn’t all these stages of grief become part of the life long journey too? My hope is that I can continue to find the acceptance and peace along the way and turn it into something good.

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Pneumonia and A Change of Plans

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Nora’s had a cold recently and yesterday we found out it has turned into pneumonia. This can be more complicated for a couple of reasons. I should back up a little, she’s also out of her cast.  She’s been out for over two weeks now.  Not ideal.  We had to postpone her casting twice because of her cold and now once again because of pneumonia.

But back to the complications.  Because Nora isn’t in a cast right now her spine has ‘relaxed’ into its normal state (it could possibly have progressed some too she hasn’t had an x-ray since August so we don’t know for sure). Her curve is already measuring 60 plus degrees. Since its relaxed out of cast, it’s pressing into her lungs now. This is one reason why we cast her, to get her spine straight in the cast so her lungs can grow properly. Now with pneumonia and the pressure on her lungs it could make it harder for her to kick the illness. Thankfully it was caught early so that’s on our side.

The other setback here is this will push her next casting out even further, most likely 4 weeks or more. The anesthesia team will not put her in the OR so soon after an infection in the lungs. Being put under puts a lot of strain on the lungs as it is, if they aren’t fully healed it can easily bring on a very serious infection or illness.

So this could change our casting and bracing plans for summer. This could change our summer vacation all together, which is upsetting and frustrating. But we’ve learned a long time ago with this diagnosis we have to just take it one step at a time. Right now we just need to focus on getting her healthy. Thankfully she’s a tough little tater tot. She’s smiling through it all, a good sign indeed! We can do this!

 

Rainbows & Lollipops or Casting, Bracing & Surgery

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Next month Nora will get her ninth cast. It will also (hopefully) be her last cast. Is it strange to say the feelings this brings up are bittersweet? It is strange. I’ve had a love hate relationship with Mehta casting.

I love that our surgeon is open minded and aggressive yet conservative too. Those are the ideal qualities you want in a surgeon. I’m grateful he wanted to do casting with Nora at just 14 months old to try and slow her curve’s progression and buy very valuable growth time. Casting for congenital scoliosis isn’t considered by many surgeons yet; many still don’t think it can work as a delay tactic for surgery in these kids. I love that casting has worked for us for almost two years. I love that casting hasn’t held my daughter back from doing most of the things normal kids do. I love that she’s young enough that she probably won’t remember any of the difficulties involved with all of this. I love that she’s young enough to be proud of her cast and not embarrassed or worried about being different and being teased.

But I hate the cast too. I hate, and I mean hate, the actual casting process at the hospital. I hate how difficult it is to take your tiny little child to the OR and be given anesthesia to be put to sleep while she’s then placed in traction to have a heavy plaster cast applied to her torso. I despise even more how hard the process has been for us coming out of anesthesia. Nora has a horrific time coming out of anesthesia. I’ve done this nine times now and I’ve yet to make it through without tears and begging and pleading with God. I hate that I don’t get to have the collapse-in-your-arms-and-feel-your-child’s-chest-breathing-on-yours type of hugs. I hate not being able to stroke her back. I hate sponge baths as much as she does. I miss water and sand and not worrying about my child getting head-to- toe dirty like a kid should. I hate getting smacked in the head, face and shins from that hard-as-a-rock cast in the middle of the night. I hate that this has been two years of our life, of her life, when she’s so little. I feel robbed in ways.

But I would do it all over again. And I would, without hesitation, encourage anyone who has the opportunity to cast their congenital (or idiopathic) early onset scoliosis child to do it. The benefits are far too great.

So cast life will soon be coming to a close for us. I’m really really excited but I’m also anxious and scared because now I have to think about our next steps. I’ve been able to live in this, in some ways, safe casting world for so long now, I’ve lived cast-to-cast and now that’s ending. Once this last cast comes off in May she will be fitted for a brace for summer and then have surgery late summer.

Now I have to think about surgery. We haven’t made any specific decisions yet on what the surgery will be, we have some time for that, but I still have to think about it now. I’ve made the mistake of watching an actual surgery on YouTube that is a potential option. Why? Because I’m a little crazy. I didn’t watch long but now when I think about surgery, I think about that happening to her. To my sweet little Nora. I think about the how long the surgeries are, the risks, the recovery. My heart races and I can’t help but think I’d much rather be in the recovery room after a casting. That’s right, the thing I just said I’ve despised the most suddenly sounds like rainbows and lollipops in comparison.

For a little longer, I can just focus on this last cast. And on that note, I think it’s time to dig into our Duct Tape collection and pick out our next and final decorative cast tape. Bittersweet.

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Tummy Time, Back to Sleep and Infantile Scoliosis….What Do they All Have In Common?

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I was asked to researched and write the following article for the Infantile Scoliosis Outreach Program.  Please note this piece is not considered a valid research study.  I do, however, reference peer-evaluated studies that have been accepted by the broader medical community.  I would also like to note, while my focus for this blog has generally regarded my family’s personal journey and/or has been specific to congenital scoliosis, the information in this post DOES NOT have any bearing on congenital scoliosis. Congenital Scoliosis is present at birth and means there are abnormally shaped vertebra(s).  There is nothing that can be done to prevent CS from occurring and there is nothing that can be done to affect the progress of CS besides proper medical intervention.    This post addresses concerns around the infantile/early onset idiopathic (no known cause for scoliosis) scoliosis group only.

 

In the early 1940s, Dr. Harold Abramson, a New York pediatrician, pored over heartrending reports of babies who accidentally suffocated while they slept. As he reviewed case after case, he noticed that a vast majority of the deaths occurred when babies slept on their stomachs. After decades of additional research the federal government, the American Academy of Pediatrics and child advocacy groups formally launched the Back to Sleep campaign, instructing parents to place infants on their backs for sleep for the first year. There’s no question the Back to Sleep campaign has helped save lives. Since 1994 the rate of Sudden Infant Death Syndrome (SIDS) has declined by more than 50 percent. What this campaign has also effectively done is scare new parents so much that they don’t want to put their babies on their tummies ever.

More research suggests taking away “tummy time,” cuts off a pivotal avenue of development. The less time infants spend on their stomachs, the slower they generally are to acquire motor skills during their first year, which means the potential delay of simple feats like lifting their heads as well as more-complicated movements like rolling over, crawling, and pulling to stand. Doctors have hesitated to sound the alarm about this, since children usually walk shortly after their first birthday regardless of how much tummy time they’ve had. But a growing body of evidence now suggests that the timing of the motor-skill milestones that precede walking is crucial and can even factor into long-term health and cognitive ability. Pediatricians however, have had mixed reactions to this and have passed this off as inconsequential. Others, including the American Academy of Pediatrics, champion of the Back to Sleep campaign, have seen the head shapes and motor hang-ups as a harbinger of future problems and recommended supervised tummy time when a baby is awake.

Here’s where infantile scoliosis fits in. Parents are seeing the potential of death as outweighing the potential of delayed motor skills. What parents aren’t hearing are the potential increased risks of Infantile Scoliosis, the most challenging orthopedic condition in babies, from not having sufficient tummy time.

Prior to the 1980s the incidence of infantile scoliosis was much higher in Europe where infants were commonly placed on their backs to sleep. During this time babies in the US were traditionally placed on their stomachs to sleep and the incidence of infantile scoliosis was a rare phenomenon in North America accounting for less than .5% of all diagnosed cases of scoliosis. During the 1980s Europeans adopted the tummy sleeping position for children and the incidence of infantile scoliosis dropped to record low numbers.

Now take a look at Scotland before the 80s, where parents were routinely advised to place their infants to sleep on their backs, cases of infantile scoliosis accounted for 41% of all diagnosed scoliosis cases. After 1980 Scotland reversed their stance on back sleeping and the incidence of infantile scoliosis in Scotland dropped to 4%. At the same time there is research going as far back as 1966 that states one of the benefits of stomach sleeping was the prevention of scoliosis.

So what do parents do with this conflicting information? Putting an infant to sleep on his or her back is without a doubt the recommended sleep position for a baby’s first year of life. However, tummy time is equally important and recommended for motor skill development and many would say for the prevention of scoliosis. The key is getting a sufficient amount of tummy time in. Parents should be encouraged to have their babies spend a healthy chunk of awake and supervised time on their tummies. This should begin soon after birth once the umbilical cord stump has fallen off. Several times a day so the child becomes used to it early on and likes it. There are lots of ways parents can practice tummy time, propping a baby on a nursing pillow while on the floor with them or even on a parent’s chest are great ways to get that added tummy time in and keeping everyone comfortable. Baby wearing is also greatly encouraged, as it too also helps promote physical development and decreases the risks of a baby developing infantile scoliosis. When parents choose a baby carrier it’s important to look for one that is comfortable to wear but is also ergonomic for baby.

How Do You Know You Have The Right Pediatric Orthopedic Surgeon?

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Your child has just been diagnosed with the Early Onset Scoliosis. Any time you receive a rare disease diagnosis it can be confusing just trying to understand it and not knowing where to start. Chances are your pediatrician isn’t that familiar with the disease much less the latest treatments. It’s important to understand what Early Onset Scoliosis means and how the condition and treatment for it is vastly different than Adolescent Scoliosis. Early Onset Scoliosis can encompass Infantile Scoliosis (occurring from birth to age 2), Congenital Scoliosis (a structural abnormality in the spine that is present at birth but can go awhile before being detected), Syndromatic Scoliosis (scoliosis brought on by an underlying condition) and scoliosis that sets in between the ages of 2 yrs old and 8 yrs old.

This distinction is incredibly important. Here’s why: The majority of cases of ‘scoliosis’ are adolescent scoliosis. In adolescent scoliosis treatment happens on a very mature spine that is either completely finished growing or very close to being complete. Early Onset Scoliosis treatment happens on a very immature spine that has a lot of growth ahead. That major growth that still needs to occur provides a lot more challenges and changes every aspect of how the disease should be treated. A rapidly growing spine that already has a curve naturally has the ability for that curve to grow larger and faster.

Early Onset Scoliosis is rare. Congenital Scoliosis is even more rare. There are orthopedic pediatric surgeons all over the United States that specialize in ‘scoliosis.’ However, the number of pediatric orthopedic surgeons who have extensive experience in Early Onset Scoliosis and Congenital Scoliosis is much smaller. Let me repeat that because it’s an important statement. The number of pediatric orthopedic surgeons who have extensive experience in Early Onset Scoliosis and Congenital Scoliosis is much smaller.

Over the last couple of years, I’ve connected with more parents than I can count who have a child who has been diagnosed with some type of Early Onset Scoliosis. Unfortunately, some of them have not been seeing the right surgeon because it’s not something that is clear for parents to understand. You can love your doctor’s personality and bedside manner. He or she can have great experience in treating a much older and mature spine but that doesn’t necessarily make him or her the right fit for your child’s EOS diagnosis and treatment. There are many well meaning surgeons out there who treat adolescent scoliosis and then one day the rare Early Onset Scoliosis patient is carried in their door and they are probably intrigued and excited about the opportunity to have a rare case. But if they aren’t up-to-date on current treatments, training, and more or less have extensive experience treating this complex disease of young children, then frankly they are not the best choice.

Early on in our daughter’s diagnosis we sought out a second opinion. We saw the Chief of Pediatric Orthopedic Surgery at a top five ranked Children’s Hospital in the United States. He was the top guy in the department and his bio said specialty with scoliosis and spinal deformities. But it was clear after meeting with him and after doing a lot of research on congenital early onset scoliosis that he was absolutely dead wrong in what his treatment plan was. He didn’t have expertise in early onset and frankly he should have said so and referred us to the proper hospital just a few miles away (a hospital I didn’t even know anything about at the time). He was a ‘nice’ doctor and I’m sure great in other areas of orthopedics that he specialized in but what if we had only seen him and followed his treatment plan?

So how’s a parent to know? Here are some key questions to ask to make sure you are seeing the right type of surgeon: (Note these are not questions that are specific to understanding your child’s diagnosis)

1. Is your background in treating adolescent scoliosis or Early Onset Scoliosis?
2. How many patients have you treated with Early Onset and/or Congenital Scoliosis or how long have you been focusing on the EOS group?
3. What organizations are you involved with that are dedicated to advancement in research, training, and education of EOS? (Be sure to and look up the ones mentioned)
4. How many patients have you treated with EOS? How many do you treat in a year?
5. Do you have training in Mehta/EDF casting? If not, do you back the philosophy/ treatment of Mehta/EDF casting for EOS idiopathic and if appropriate for Congenital EOS, and do you refer patients to surgeons who do have extensive experience in Mehta/EDF casting?
6. Do you support the idea of your EOS patients getting a second opinion? Are there specific surgeons who you recommend for second opinions?

If your surgeon would like to cast or brace: What is your goal for casting/bracing? To cure, or provide some amount of correction through growth or to simply hold the curve to buy growth time?

Nora is in her eighth cast right now and over the past two years I have learned a lot about Mehta/EDF casts. While Nora’s casting goals are different than those with idiopathic EOS I’ve learned a lot about casting treatment for both. I’m not an expert by any means but I have learned enough to know I can go toe-to-toe with the best of the experts. That being said, myself and many other parents who have been deeply involved in the Mehta/EDF casting life, have seen some really bad casts out there. I’ve seen pictures of babies with large permanent scarring on their bodies from poorly applied casts that dug into the children’s skin. I’ve seen casts that had tiny tummy holes that caused the child to throw up several times a day for days on end. I’ve seen casts that were so loose and ill fitting there was no way they could have been effective. I’ve seen casts that incorporate a lot of these things and have caused so much pain for a child that the surgeon’s answer was to prescribe narcotic painkillers to an infant. A properly applied cast should not cause discomfort much less pain. I’ve seen casts that just don’t make any sense at all. Casting is just as much a science as it is an art and there is a learning curve to it.

So if your surgeon is suggesting casting as a first line of treatment how do you know your surgeon is going to apply a proper cast? Here are some important questions to ask:

1. Have you been trained in Mehta/EDF casting? Where did you receive this training?
2. How long have you been casting?
3. What materials do you use to apply a cast? (Typically they are made of plaster and often have a fiberglass layer on top. If your surgeon just uses fiberglass and not plaster ask why? Be sure to ask if they have patients that had success in casting with fiberglass only)
4. Does the hospital have the proper casting table that’s specific to casting an infant/toddler and/or young small child? What kind is it? (This is extremely important and be sure to look it up or check with others to make sure it’s a proper table)
5. Will the cast have shoulder straps? (More and more surgeons who are casting do not use the straps. The shoulder straps are needed when the apex of the curve in the spine is anywhere from T-8 and above. However most idiopathic curves are below T-8 but there are some surgeons who no matter where the curve is, will only apply casts with shoulder straps and that’s perfectly ok too. Some of the best looking casts I’ve ever seen come from surgeons who have been doing this a long while and only use shoulder straps.)
6. Can you show me pictures of casts you have applied?
7. Can you put me in touch with any former or current patients who have or are casting to hear their experiences?
8. Have you had to remove casts early because of structural or application issues that have caused problems? If so why? And how often has this happened?

And here’s what a properly applied cast should generally look like:

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• The cast should start at the chest and wrap all the way around the back. It should lie just under a child’s arms and be about three inches above the shoulder blades. This upper half of the cast should be snug but not too tight. It should not be loose at all.

• Most casts should have a small, SMALL, “D” shaped hole in the back on one side. Now the “D” hole in some cases aren’t necessary, generally if there is little to no rotation in the spine a hole on the back isn’t needed but that isn’t common.

• The front of the cast should have a wide, I repeat WIDE, tummy opening. This allows for proper growth of the ribs/chest wall cavity. It also is necessary to allow the digestive system to expand and contract naturally. A small opening is worrisome and something we are seeing more and more of. If you see pictures that show casts with small tummy holes ask why?

• Now the literature supporting mehta casting says the front tummy hole should not only be wide but also hourglass shaped. Where the “sides” tuck in around the rib cage to support it. That being said, I have seen many casts that just have a LARGE round tummy hole. There is one facility that is very reputable and is considered one of the best places for EOS and Mehta/EDF casting treatment and their casts don’t have the hourglass shape but do have the large round tummy hole. Some surgeons seem to be customizing the tummy hole depending on the location and severity of the curve. If the pictures of casts the surgeons shows you are not consistent in shape and design, ask about the benefit of the changing shapes and what your child’s cast will look like.

• The bottom of the cast should have a snug bar that wraps around the belly and to the back. There should be a snug “nip” at the waist of the cast as well.

 

There’s A Place For Each Small One…

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During the holidays, we dug through the drawer with all of our old DVDs looking for the Christmas movies to introduce to Nora.  Disney’s Mickey’s Christmas Carol was one of them. The Mickey’s Christmas Carol DVD has three other “bonus” cartoons, with a special one titled Small One. I had never seen this animated short film before that was produced in the late 1970’s.  I fell in love with it instantly.  And to me,  the message in this movie speaks to our hardest hit scoliosis warriors.

The story tells of a young boy, outside Nazareth, who has a small donkey that can no longer live with a farming family because he cannot earn his keep. The donkey is playful and good spirited, but he is older and smaller than the other donkeys. The father tells his son that the donkey must be sold, but when the son brings the donkey into town, the pair is ridiculed and mocked. The son loves the donkey and is hurt over all the abuse that they suffer. The redemption comes when they encounter a man seeking to purchase a donkey and he shows them respect and kindness. The man needs a gentle…special donkey to carry his pregnant wife to Bethlehem. The boy sells the donkey to the kind man and watches as the couple and donkey leave on their journey as a bright star appears in the sky.

While they don’t say it, it’s clear the kind man was Joseph. And he was looking for a donkey to do the very important job of carrying Mary, pregnant with baby Jesus to Bethlehem. The point is that despite his appearance, this donkey will play an important role in history. It’s a story that has Christian themes, but transcends religion and really is a story about friendship, sacrifice and purpose. And how each individual deserves dignity, everyone has their place, and kindness should be shown to everyone.

The beautiful, haunting and even heart-rending, theme song has such meaningful lyrics. The obviousness of the song immediately reminded me of all the stories I have read from parents, teens, and adults on numerous support groups about their struggles with what severe scoliosis and the surgeries they have had to endure have left them with… How they have been robbed of something that seems so basic…Stature. So many heartbreaking stories that showcase the cruel world we live in where being exceptionally short and different is a punishment in this world.

The song from this movie is kind, sweet, and purposeful.  Reminding that all are  loved and needed and they too can play an important role in history.  Maybe this is why I fell in love with this movie the way I did and got chocked up every time I watched it. Here are the lyrics:

Small one, Small one, Don’t look so blue
Somewhere a friend is waiting for you
Someone still needs you to brighten his day
There’s a place for each Small One
God planned it that way
Time is passing, days are few
Give while you can to one smaller than you
All things living great and small
Each brings a gift that is needed by all
Small one, Small one, Don’t look so blue
Somewhere a friend is waiting for you
Someone still needs you to brighten his day
There’s a place for each Small One
God planned it that way.

You can watch Small One here on YouTube or just listen to the theme song which is played in the opening credits.  https://www.youtube.com/watch?v=MGa6oCxhpZA&noredirect=1

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Social Media Hooked Me Up with My “Match.com” Style, Perfect Mom Match.

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Since the day we got Nora’s diagnosis at just 5 months old, I’ve thought about something related to her condition or treatment Every. Single. Day. I’m not complaining, I know we all of have something we are dealing with in life, I’m no different than anyone else.  And I’ve taught myself how to deal with it so that it doesn’t constantly weigh me down. Like anything, some days are better than others. But I’m so incredibly grateful to have gotten this diagnosis in the age of the internet and social media. I can’t imagine trying to navigate through all the ins and outs of this complicated rare disease without all the resources and support online.

Through social media, I’ve met so many other parents and families who deal with some of the same things we do. I’ve learned so many helpful things, they have been there as an amazing support system that unless you are living this you can’t fully comprehend; they can hear my tears and help wipe them away through the keystrokes of their computers or tablets. And they are right there to celebrate victories with emotionicons and uplifting typed words. I have strong feelings and friendships with many of these people, yet I’ve never met them. It’s weird and really cool at the same time.

A while ago I met a mom in one of my smaller support groups that’s dedicated to just congenital scoliosis. It’s a much smaller group simply because it’s so rare. She was new to the group and was sharing her daughter’s story one day. I was instantly excited and intrigued, her daughter’s case sounded very similar to Nora’s. It was incredible, that just doesn’t happen with congenital scoliosis, they are all so very different. Our daughters were only a few months different in age, they both have hemi vertebras at T-10 (Nora has one at T-11 as well but at the time we were hoping it wouldn’t be as big of a problem as we later learned it is) and had the same degree of curve, they were both the same height, weight… the list went on. And we learned we were both in the process of setting up appointments to meet with the same surgeon who is considered one of the best in the country. It was just what I needed at the time, to actually find someone whose child’s case was so similar.

We shared with each other every single report and x-ray we received from our surgeons. I even shared it all directly with our surgeon asking question after question. In time, I found out that, yes, our daughter’s cases were very similar yet they were still different. We were going down different directions of treatment and soon we learned Nora had two discs in a row that would have to be addressed, changing our treatment options and her daughters case changed a bit too.  This was difficult and confusing for me at the time, it was hard to wrap my head around the different directions and it scared me. I kept thinking our cases were still similar; they had to be treated the same way. It took time on my part to fully grasp the complexity of this disease and deal with my own denial yet again.

We still continue to share every detail we get with each other. We’ve also both learned that our daughters will be facing lifelong battles with scoliosis; this isn’t a one surgery and done situation. Another punch in the stomach neither of us were really expecting.

This woman’s daughter is scheduled for surgery next week. For weeks now we’ve been in contact with each other pretty frequently, often discussing all the details, coming up with questions to ask the slew of doctors who are involved, talking about how we will actually handle surgery day, how surgery will impact the rest of the family, etcetera, etcetera.

I think about her, her daughter and her family a lot and lately…all the time. I talk about her and her family with Matt pretty often too. So much so that Matt is even asking often how things are going knowing full well how stressful it is leading up to surgery. Yet I’ve never met her or even spoken live words with her. It’s the oddest thing to feel very connected to someone you’ve never met. I’m convinced if we lived near each other we would be friends. I wish I could be there to give her a hug or hold her hand when her daughter is in surgery. I know I will be thinking of her that entire day, hoping and praying.

I hope to actually meet her face-to-face one day because we understand each other in ways no one else really can. It’s a bond I can’t explain. And yet it’s still strange to me on the surface. I hope our daughters become friends too one day, some type of modern day pen pal or something. Somehow in my crazy head it’s a comforting thought in the sea of scary facts and unknowns swimming in my head, the idea that our girls could have someone else out there who they can relate to, confide in and is someone who actually understands firsthand what each other is going through, is one of my hopes for both of these girls.