A Year Later...

This has been an interesting time of year as nearly every facebook "memory" that comes up has had to do with everything we went through with Marcella's pregnancy last year.  This was the time of year that we found out Brody would have dwarfism.

We went through such a whirlwind of emotions as we tried to mentally prepare ourselves for everything.  We didn't know what kind of dwarfism he had.  We didn't know if he would survive the birth.  We didn't know anything for certain.  We were hoping for the best and preparing for the worst.  All the while, we just had to keep going through life.  My practice still had to be ran, and Marcella still had patients that needed her.

Fast forward a year and it's incredible how things have changed.  Brody is the light of our lives and he has taught us more in the last year than we ever imagined.

Yes, he has dwarfism.
Yes, he has been in and out of the hospital more in his 10 months than either of us have in our entire lives.
Yes, he will have some physical issues to overcome for the rest of his life.

BUT, he is finding a way.  He is adapting.  We are adapting.  I think that is all you can do through life.  Life throws a punch and you can either take it, you can dodge it, or you can counter it with one of your own.  Brody is not only countering like a champ, but he's winning the fight.

If life lands a punch and knocks you down, you have two choices:  stay down, or get back up.  We've been knocked down a few times, but we keep getting up.  Sometimes, I have to pull Marcella back up.  Sometimes, she has to pull me back up.  Sometimes YOU ALL pull us back up.  But we get back up.

So keep getting back up.  Keep the fight going.  Throw a few punches of your own.  Lean on your spouse, friends & family when you need to, and help pick someone up when they are down.  If you need someone to help, contact us.  We are happy to help in any way that we can.

Thank you for all of your support throughout the past year.  We, and Brody, appreciate it!

Merry Christmas, and may God bless all of you!

For Lincoln

October 28th, 2014 was a Tuesday. I was 20 weeks and 6 days pregnant. And it was the day we found out Brody had dwarfism. This was the beginning of a long fearful and lonely road as we opted out of an amniocentesis and were faced with waiting another 20 weeks to know what type of dwarfism Brody would have. We were told a wide range of possibilities, from achondroplasia, to an atypical form of osteogenesis imperfecta, to perhaps a lethal form of OI. Even amongst parents of little people we had communicated with, finding out at 20 weeks was pretty early to get this diagnosis. While many friends and co-workers were also expecting the same time we were, I found myself increasingly bitter at the complaints I would overhear, such as migraines, swelling, and morning sickness. I was dealing with those things too, but also hoping and praying for my baby's health and survival. It's an experience I wouldn't wish on anyone, and its one you couldn't understand unless you have walked that path yourself.

A couple months after our initial diagnosis, I was on the Parents of Little People page on Facebook, and found myself reading a story that hit close to home. Another couple was writing, as they had found out they were also expecting a little boy with dwarfism. They too found at 20 weeks. We were soon in contact, and I found an immediate connection with Erica. Someone who was experiencing the same thing, at the same time! To say the support I found her in over the next few months was appreciated is an understatement. And while we were in similar situations, Erica had been told her baby most likely had a lethal form of dwarfism called Thanatophoric dysplasia.

Despite the grim prognosis, they remained hopeful and optimistic. They too initially opted out of an amniocentesis, and continued their pregnancy hoping and praying for the best. Erica developed polyhydramnios, like I did, which is very common in babies with skeletal dysplasia (dwarfism). Not only is it very painful, but can be detrimental to the baby's health, and requires close monitoring. Her amniotic fluid continued to rise, and an amniocentesis was needed to delay premature birth. As the benefits now outweighed the risks, they proceeded with genetic testing on the amniotic fluid removed during the procedure. We were devastated for them when the results came back confirming Thanatophoric dysplasia. Erica endured multiple other amniocenteses to postpone an early delivery and to give Lincoln the best possible chance for lung development by staying in utero as long as he could.

On August 26th, 2015, Lincoln Matthew Sahm was born. He lived 10 hours and was surrounded by loving family. While Lincoln's earthly life was far too short, we have so much to celebrate. We rejoice in the fact that no matter how many odds were stacked against him, his parents chose life! They embraced and loved Lincoln, no matter his diagnosis. In an age were life seems to be so disposable, abortion is almost an expectation if there is something out of the ordinary with a pregnancy. And through all their heartache, they chose to share their journey. Because of their bravery in sharing their story, hundreds (if not thousands) of people have learned of Lincoln. Talk about a legacy! Lincoln's journey also reminds us of so many things. For one, none of us are guaranteed a certain amount of time. All of our lives are finite. What legacy will you leave behind? Secondly, don't take your health for granted. If you are fortunate enough to be able bodied and healthy, use it to the best of your ability! Lincoln's story also reminds us that while every pregnancy is the beginning of a new life, it may not be the experience you had. Before complaining about temporary inconveniences of pregnancy, keep in mind someone else may be fighting for their child's life, or their own. It will put things in perspective quickly. Lastly, if you see someone who may be different than you, don't be so quick to judge, and don't pity them. Realize that our similarities far outweigh our differences. As our buddy Mr. Grant has said, "Go up and say hello. That person may just be your new best friend!" If you see a little person, realize they are just like you and me, just small. And please, don't use the "M" word.

There's so much more to their journey and Lincoln's story we can't possibly begin to know or comprehend. We hope this short bit we have shared does them justice. But what we do know is that by sharing his story, we are honoring his life. So please, share his story, and keep his memory alive. Be a little kinder to one another, and remember "a person's a person, no matter how small."

A Little Information About our Little Boy's Diagnosis

Brody was born Tuesday, February 24th, 2015.  After spending 18 days in the hospital, he is now home and doing very well.  He is eating, sleeping, pooping, and doing everything that a baby likes to do.  He still can't catch a football too well but hey, baby steps, right?

To rehash the last few months, we had been operating under the assumed diagnosis of Osteogenesis Imperfecta.  This is also known as Brittle Bone Disease.  Brody's doctors assumed that the shortness and bowing of his arms and legs were due to fractures while he was in the womb.  Another reason they were working with this assumption was because it was one of the most common forms of dwarfism.  Achondroplasia is the other most common form, and Brody had none of the characteristic findings associated with achondroplasia.

Turns out, our boy is much rarer than we give him credit for!  Brody has been diagnosed with a form of dwarfism called diastrophic dysplasia.  Diastrophic dysplasia occurs in approximately every 1 in 100,000 births.  Some estimates even have it as rare as 1 in 500,000!  His head and torso are average-sized and his arms and legs are much smaller than average.  When he is full-grown, Brody will likely be under 4 feet tall. 

One of the first times I got to see Brody in the NICU.

Diastrophic dysplasia (DD) is a disorder of cartilage and bone development.  Since that is the case, most of his health issues going forward are going to be musculoskeletal and orthopedic issues.  First off, we will be seeing a pediatric orthopedist next week to begin the process of correcting his club feet.  This will be a series of casts over many months that will gradually help turn his feet out to their proper position.  If the casting doesn't work, surgery may be needed to fully correct the feet so that he is able to walk.  Walking in children with diastrophic is usually a little delayed.  He may not be walking until about a year and a half to two years at the earliest.  As he ages, he will also be at a greater risk for early onset of arthritis, scoliosis, as well as other forms of progressive skeletal conditions.  I guess it's a good thing that he knows a chiropractor, am I right?!

While the majority of Brody's issues will be of an orthopedic nature, DD also has a few characteristic findings that are minimally problematic compared to the potential spinal issues.  Brody has what are called "hitchhiker thumbs."  There are lots of average height people who have hitchhiker thumbs and as long as he is able to function properly with his hands, they won't require surgical correction.

He won't have any trouble hitching a ride with a thumb like that!

He also has a very minor cleft palate in the back of his mouth.  This will probably need corrected as well to prevent him from having sinus issues and also to help with proper speech development.  About half of kids with DD are born with a cleft palate.  This shouldn't give him too much trouble as it has minimally affected his feedings.

The last main characteristic that he has developed is what is called cauliflower ears.  If you know anyone who wrestled growing up, odds are that they have a cauliflower ear.  Basically it is a swelling of the cartilage of the ear that alters the shape of the ear, usually permanently.  If you've noticed that we've had a sweet head wrap on Brody in some of our pictures, that is to keep the swelling down and hopefully to minimize the long-term change.  He didn't have them in the picture above, but they commonly begin swelling within the first few weeks of life, which is when his began to swell.

It's not a female's headband, it's European!

The crazy thing about diastrophic dysplasia is that it is likely genetic.  It is a recessive disorder so that means that Marcella and I are both carriers of the gene.  Most of the other forms of dwarfism are commonly a random mutation and the parents are no more likely to have another child with dwarfism than anyone else.  Since Marcella and I are likely carriers (we still have to undergo genetic testing to confirm) we likely will have a 25% chance of having another child with diastrophic dysplasia when we are ready to make that decision.

So, hopefully this helps people understand a little more about this condition.  Diastrophic dysplasia is so rare that he neonatologist at the hospital said Brody was his first case in 30 years of practice!  This is a learning experience for us as well so we are learning a lot of this as we go along with you all.  Brody has already conquered every obstacle in front of him, but we still have a long ways to go in his journey.  Your prayers throughout this whole process are much appreciated and we really are blessed and humbled by the support that we have received not only from our close friends and family, but from complete strangers who have been touched by Brody and his story.  He is absolutely perfect and he has taught me a deeper level of love than I ever could have imagined.

He's here, he's healthy, and he's already doing big things in our lives!

Mike

State of the Brody Address

So we are getting close to Brody time.  Marcella is now 35 weeks along and Brody really could decide to come at any time if he really wanted to.  For me, the pregnancy has gone insanely fast.  I'm sure Marcella would disagree.  Pretty unbelievable that we are a month from meeting our little dude and having a very different life than the one we have come to know.  

We have had lots of questions ourselves, and we have been asked a lot of questions by friends and family so I am going to write this blog with the intention of answering those questions as best we can.  

To start off, there is still a lot of stuff that we don't know and we won't know for a while.  During all of our time with our doctors, we have been given a lot of generalities.

It could be this kind of dwarfism.  It could be THAT kind of dwarfism.  We really can't tell at this point.  He could potentially still have a lethal form and might not survive.  He could have a very atypical form.

Many of our friends and family are frustrated at the lack of answers that we have after all this time.  It's been 15 weeks since we got the diagnosis of Skeletal Dysplasia (dwarfism) and we don't know any more about his condition now than we did then.  Even after monthly growth checks, weekly biophysical profiles, and many other appointments, we don't have any new answers.  Trust me, if anyone is frustrated by the lack of clarity, it is Marcella and I.

The reason that they cannot narrow anything down for us is that skeletal dysplasias are extremely difficult to diagnose before the baby is born.  Our geneticist told us that the average accuracy of prenatal diagnosis of skeletal dysplasias is 20%.  That's right, they accurately diagnose the form of dwarfism before the baby is born one out of every five times.  Those are not great odds.  The reason for this is that there are over 350 different forms of dwarfism, and there is a lot of variability even between people with the same form of dwarfism.  There are also limitations with the ability to visualize the baby and skeleton with ultrasound, especially when you are looking for bowing and fractures.

Brody doesn't fit neatly into any of the diagnosis of any of the specific forms of dwarfism, but the two most common types are called Achondroplasia and Osteogenesis Imperfecta.  

Achondroplasia is the type that most people think of when they think of dwarfism.  People with achondroplasia usually have larger heads, bowing of the bones of the arms and legs, a larger head, and a prominent forehead that is characterized as "frontal bossing."  Peter Dinklage and Jason "Wee Man" Acuna are celebrities who were born with achondroplasia.

Osteogenesis Imperfecta (OI) is also known as Brittle Bone Disease.  It's a misnomer because it is not actually a disease, it is a genetic mutation most of the time.  Children who are born with OI fracture bones very easily.  Broken bones can even happen in the womb before the baby is even born.  The fracture and healing of bones in the womb is what gives them the shorter and bowed appearance.  They commonly have smaller chests, rib fractures, and can even have skull issues if they have a more severe form.  Oh, there are eight different forms of OI.  Some forms are extremely severe, some are so minor that it's hard to tell the person even has it.  So there are 350 different types of dwarfism, and OI has 8 different types.  You can see how diagnosis is difficult.

These are the two types of dwarfism that we have been told Brody may have.  However, he doesn't neatly fit into either of these two.  He doesn't have frontal bossing, his chest is normal sized, and his organs are all functioning well as far as we can tell.  We haven't seen any obvious fractures, but we cannot rule out that he doesn't have them. 

Even after all of this, here is what we know:

1. We can assume, with a large amount of certainty, that he does have some form of skeletal dysplasia (dwarfism).
2. We are uncertain what type he has, and the severity of any potential complications is unknown since we can't determine which form he actually has.
3. As far as we can tell, he's a healthy boy otherwise.

From our experience with the doctors, as well as many different parents of little people that we have met on Facebook, this is common.  There are just too many unknowns until Brody is right in front of us.  Even then, there may be questions that we won't have the answers to for a while.  The uncertainty is frustrating, but this is something we are going to have to deal with. 

However, life is uncertain and nothing is guaranteed.  You just move forward with the hope that everything will be alright while you lean on those close to you.  We have reached a point now where we have accepted whatever form that he will have and will make the necessary adjustments to our life to accommodate Brody and his needs.  The problems that we used to think we had are nothing more than an annoyance at best now.  The perspective on life that we have been given through this process has changed us in a deep way, and all for the better. 
 

We appreciate all who have reached out and given us a kind word or a prayer of support and we will keep you all posted as we have new information.

Mike & Marcella

“We’re all human, aren’t we? Every human life is worth the same, and worth saving.” – J.K. Rowling

First off, J.K. Rowling is a boss. 

Secondly, this is a topic I've wanted to write about, but wasn't sure when was the "right time." With yesterday marking the March for Life, it seemed an appropriate time to broach the subject. 

As I mentioned in a previous post, the day we received the news of Brody's diagnosis, I got three phone calls I never fathomed receiving: each one from a different member of my new medical team offering me an expedited abortion within the next week if I so desired. How was it that I went from receiving such great news-it's a boy!- to suddenly having three offers in 24 hours to "take care of things?" This was never a consideration for us, but also never a position we could have imagined ourselves in. Wasn't this for unwed mothers of multiple children, teenage girls not prepared for motherhood, or victims of rape? Or at least that's what the media likes us to think as they vehemently defend the "right" for abortion. How could this be for us, just because our situation wasn't what we had pictured? How did his life not matter now, because he has a condition that would be undesirable to many? 

Earlier in my pregnancy, I had read a story of a young couple also expecting their first child who was unfortunately diagnosed with anencephaly. Instead of hiding their story, they decided to honor their son's life. They made a bucket list, and spent the remainder of their pregnancy documenting all the adventures they set out to do in their son's honor. I followed their story before receiving our own news, and thought about how I didn't think I could find happiness in such a depressing time if I were in their shoes. Little did I know how much their story would mean to me just a few weeks later. 

Our initial visit with our specialist ruled out (to the best of their ability), a lethal form of dwarfism. We were beyond thankful for this news. But the seed had already been planted. Even if he were to have a fatal form, should his life be any less celebrated? Even though we opted not to terminate, would we still be honoring Brody by not talking about him, just because the situation isn't the norm? What if he didn't make it, and I never shared news about him, because it was just too hard to talk about? We hadn't even told many people beyond close family and friends we were expecting prior to 20 weeks. Suddenly, I didn't want to keep things under wraps; I wanted Brody's life to be known and honored. If the couple I mentioned could find happiness in their situation (given a much worse prognosis), certainly we could too. 

Prior to this I had been adamantly opposed maternity pictures. Bare bellied women staring off into the distance while standing in a field aren't tasteful in my opinion, and this was the tacky visual I got when thinking of maternity photos. But now my thoughts had changed.  What if I didn't document this time with him? What if I only ever had a few pictures of  Brody? I decided ask our neighbor Ashley to take some photos of us to use on Christmas cards. Nothing over the top, but I something I would always have. (And for the record, we both remained fully clothed). 

Next, Mike got to work on the blog. Frankly, it's in part to help share our story with friends and family so we aren't telling everyone updates 30 times a day. But it became something else. It's another way to share Brody's story; to have documentation of his existence. And through sharing our story, we have "met" so many people with similar stories (through the joys of the internet). It's been amazing how people who otherwise would have been total strangers have become lifelines. Many strangers have reached out, more so even than most our own family members, and been able to empathize in a way others can't who haven't been in the same situation. 

Most of this change in heart, for me at least, was going on over the holidays. I suddenly found seemingly simple tasks nearly impossible to finish. I set out to find the perfect stocking for Brody. While standing in aisles at Hobby Lobby, I would debate for hours over what kind of stocking to get. Mostly, I wanted to find something that would always be his. Here I should be overjoyed to be preparing for our new baby, and all I could think about was how I couldn't get a stocking that said "Baby's First Christmas" because what if he wasn't here next year? What if this was the only Christmas I had with him? I wanted something that could be hung every year, that would always be his, and could never be mistaken for a future child's possession. My search proved less than successful, and eventually I gave up and got a stocking with a 'B' bedazzled on it. I exhausted every Christmas aisle, in basically every story in Wichita searing for something with a 'B' on it. I may or may not thrown stockings in Target while frantically looking for one with his initial on it, all to no avail. I made him a silent promise that if he were here next year, I would get him a much less flamboyant stocking more fitting for a boy, but that was the best I could do this year. Christmas cards proved to be the same challenge. Had we not received the news, I wouldn't have plastered his name all over Christmas cards. We had initially thought about keeping a name between us until he was born. But again, I found myself wondering what if I didn't include his name this year, and next year he wasn't here? And then should I ever include it? After a lengthy internal debate in the Walmart photo department, I opted to put his name on the cards. This seemed to be in keeping with what I had decided: Brody will be included in our family, no matter what, for whatever time we have, starting now. 

The week of Christmas also marked the beginning of my third trimester, and the start of my weekly visits. My doctors apologized for the multiple appointments, stating they knew how busy we were with everything going on. These ultrasounds have become the highlight of my week. For other people, they may be an inconvenience to fit in weekly (and usually on a Tuesday morning after I've been on call Monday nights, no less), but for me they have become the highlight of my week. Each Tuesday we get to watch him kicking and moving, and thankfully, each week these have gone well. While we pray they continue to show a healthy baby, each week I also have to mentally prepare myself that everything may not look ok. Needless to say, each time I see his heartbeat and him move, I have an overwhelming wave of relief. I have a small portfolio of this kid's photos from the amount of ultrasounds we have had, but I'm grateful for them. 

The point of all this, is not to convince others to become pro-life. The fact that a life is not considered valuable or worth defending to so many people is disheartening to say the least. But for us, it has only solidified beliefs we already shared: life is precious, it is a gift, it is not ours to disregard because it may not be what we had pictured. And while we always felt this way, I can't say we were as passionate about it until it directly affected us. While we are hopefully in cruise mode until he arrives, there are still many uncertainties. We still have no idea what specific skeletal dysplasia he has. We don't know what his health concerns will be, or what our future looks like. I wish I could say this wasn't our path, because I know Brody will face challenges most others won't due to his stature. But I know the lessons he has already taught us are just beginning. He has given us a new perspective on life. Things that seemed to be big issues before now no longer matter. Daily hassles and frustrations don't bother me as much as they would have 4 months ago. And most importantly, we are more thankful for each day we have with each other, and for our health. I doubt I will ever see Roe v. Wade overturned in my lifetime, but I know that for us, a life that may be considered insignificant to many, has forever changed ours. And if maybe more people were willing to share their stories, perhaps others finding themselves in similar situations may find the value in life, no matter how small. 

2014: Iron sharpens Iron

One of the things that I have to frequently remind myself of is that even my "bad" years aren't that bad.  I will be the first to admit that I come from a life of tremendous privilege.  My parents both work very hard and do very well financially.  Schooling and college and post-graduate education were never a concern.  I have never wanted for anything necessary for survival and I have never gone without due to financial issues.

Marcella and I are both doing what we set out to do.  We have a beautiful house, two great dogs, two perfectly running vehicles (one that is paid off), and even on the months where things get tight, we still have more than enough left over in the bank after we pay all our bills and set some aside for retirement.  No matter what my teenage self thought at the time, my life has been a walk in the park compared to many.

This year was the first time that I really have been hit by something that I wasn't sure I could handle.  Now that we have gotten nothing but positive news about Brody, we are on cruise control until he is born unless things change in the next few months, but for a while it was difficult to deal with.  There are many questions that you have when you get the news that we did.  Some questions you can't help but ask, but simultaneously feel ashamed to ask.

Why us?

Why are we the ones that have to deal with this?

We did everything right.  Why can't this happen to someone else?

I will admit those thoughts have gone through my head.  I'm not proud of it.  I know that these kinds of thoughts are appropriate for anyone who gets news that their child isn't 100% average, but at the same time, you can't help but feel bad for even letting them enter your mind.  I know it was selfish.  I know I was feeling sorry for myself, but I believe that is natural.

I no longer have those questions.  I believe I have been given answers to those questions by what I choose to attribute to prayer, self-evaluation, and time.

Why us?  Because we can handle it.  Because Brody needs us.  Because we need Brody.

Why are we the ones that have to deal with this?  Because we are well-equipped to.  Because Marcella and I have an unbreakable bond.  Because we will learn from this.

Why can't this happen to someone else?  Because not everyone else can handle this.

I read a story the other day about a girl who had left her baby in the trash can because her doctors had told her they thought her child had dwarfism.  I'm not condemning this girl because I do not know her situation, but I think it speaks that some people are better prepared to handle situations like this than others. 

Now, I'm not saying that I believe I was given a child with dwarfism because I'm going to be a better parent than other people.  Nothing could be further from the truth.  I'm terrified.  I don't know how to care for an "average" kid, let alone one who is going to have special needs.  But, if God has seen fit to place this child in my life, I'm going to do everything I can to make sure that he is loved, supported, and given every chance to be successful and exceed expectations.

2014 was one of the hardest years of my life, but I'm okay with that.  You don't grow as a person unless you are challenged and I feel I have grown more in the last three months than I ever have before.

"As iron sharpens iron, so one person sharpens another." - Proverbs 27:17

Seems a little strange to think the pieces of iron that are sharpening me are a 5'4" woman and a little boy with dwarfism who isn't even born yet, but as warriors sharpen an axe before battle, I believe Marcella and I are being sharpened for what is to come, and we are ready.

2015?

Bring.  It.  On.

Mike

3D ultrasound of Brody at 30 weeks.  Already fighting us to wake up.