News About Baby Mac #4

Greetings Church Family,

It’s with a bit of a heavy (but hopeful) heart that I sit at my keyboard today to inform you of some recent news regarding our newest little boy growing in Sharon’s tummy. Baby mac #4 will be born with Spina Bifida.

As we have processed this news with our close family and friends, several questions have consistently been asked. As much as we’d love to have a personal conversation with each one of you, it’s just not physically or emotionally practical at this point. However, we want all of you to know what’s going on, so for the sake of catching everyone up, I’ll try to answer some of the most common questions here. I will also be addressing it in more detail on Sunday.

When did you first find out?
On December 27th, Sharon and I went in for her 20-week ultra-sound. It was at this appointment that the radiologists discovered his Spina Bifida and other Chromosomal abnormalities.

Other Chromosomal abnormalities?
Along with Spina Bifida, he has a visible light-spot on his heart (Echogenic Intracardiac Foci for all of you medical buffs), as well as rocker-bottom feet. These have nothing to do with Spina Bifida (SB), and gave them cause for concern...something else was up with his chromosomes. So they sent us to UW for further testing.

The above abnormalities are markers for Trisomy 18 (Edwards Syndrome). Most people have not heard of this, quite simply because there are no 2 yr. olds walking around with it. The syndrome is fatal in 100% of the cases. After further testing at UW, they were able to confirm that he does not have T18 (yea!). They are continuing to do tests in hopes of discovering what exactly is causing the light-spot on his heart and the rocker-bottom feet, as neither are connected with SB.

What exactly is Spina Bifida?
Spina Bifida is a neural-tube defect where the spine canal and backbone fail to fuse before birth. The incomplete spinal canal exposes the spinal cord and causes it to stick out of the child’s back, resulting in varied but un-reparable damage to the nerves that make up the spinal cord.   

Are there varying-degrees of SB?
Yes. To be exact, there are four, with each increasing in severity (I’ll spare you the onslaught of latin words). His is Myelomeningocele, which is the most severe.  

Is it hereditary?
This is a tricky question (and the reason we’ve become the cause for so much interest at the UW Hospital...apparently having two biological children with severe birth-defects makes you popular there). When I asked our genetic counselor “Is this genetic?”, she responded “Well, yes, because everything is genetic. But the better question is ‘Is it hereditary?’, and the answer is ‘no.’ ”

It’s “no,” because there is no one identifiable gene that carries a “Spina Bifida defect.” Any couple can have a child born with it (current statistics are 1-1000). However, chances of re-occurrence do increase after having one child born with SB (of which we knew). However, those chances are still less than 1/4 of 1%. If you’re following the math, that’s 1/4 of 1%...of the 1 in 1000. All’s to say, reoccurrence is very, very rare.

At first, these numbers used to drive us nuts. They were unnerving. For the 999 who dodge the bullet, maybe statistics are helpful. But that’s really thin ice to shimmy your hopes and dreams out onto. If you put hope in statistics, what do you do when you draw the winning Lotto ticket from the Suffering Jackpot? Then what do you do when you do it again? How do you cope with being the .25 of 1% of the 1 in 1000 who didn’t dodge the proverbial bullet? The ice breaks, and you plunge into the icy and unforgiving waters of despair. That’s what happens when you live life banking on statistics and probabilities.

For us, we decided early after Ella Mae was born that having babies is not playing genetic-roulette. This isn’t random lightning striking twice. This is the Lord overseeing the happenings of His world as He sees fit. So we honestly haven’t spent much time thinking about %‘s and #‘s.

What do you know for sure this little man will be faced with?
While diagnoses vary even within the Myelomeningocele world, there are a few common things we can know for sure. He will have:

  • Weakness or partial/full paralyses in both his legs.  
  • Loss of sensation in skin, over all affected areas with damaged nerves.    
  • Orthopedic abnormalities (like rocker-bottom feet, hip displacement or no hip sockets, scoliosis, etc).
  • Bowel and bladder control issues (i.e. incontinence, urinary tract infections, poor renal function, neurogenic bladder, etc).
  • Pressure sores and skin irritations caused from braces rubbing against skin with poor nerve-enervation and blood flow.
  • Tethered Cord complications...where the spinal cord gets “hung up” on scar-tissue left from the initial surgery that closed the spinal column. As the child grows, it causes significant traction and stress on the spinal cord, causing all of the issues noted above to worsen. Surgery is required to release the spinal cord. This is extremely common in almost all children with SB Myelo, and in fact often happens multiple times.
  • Arnold Chiari II Malformation (of which he has been diagnosed with) and all of the complications that come with that, most common being difficulty breathing and swallowing (often requiring feeding tubes or tracheas), and loss or impairment of fine motor skills.
  • Hydrocephalus, also a complication of the Chiari II Malformation, is a result of the cerebellum blocking and preventing the proper outflow of cerebrospinal fluid from the brain. Also known in laymen’s terms as water on the brain. Yes, this is as serious as it sounds
  • Executive Function difficulties...which is especially increased in children with shunted hydrocephalus (which is what Ella Mae has, and what he will have as well). 
Unlike typically developing youth, children with SB and shunted hydrocephalus do not normally develop in their executive function as they grow. Essentially, a child’s “executive function” (or psychological and cognitive processes) controls their ability to plan, problem-solve, multi-task, deal in abstractions, have good working memory, control or monitor inhibitions, exercise mental flexibility, and a host of other things due to the retarded cognitive processes in the frontal-lobe region of the brain. Blah blah blah...all’s to say...children who appear “normal” and even high-functioning while young, find it increasingly difficult to function in social or academic settings as they grow older, due to the lack of cognitive development.  


All of this is common to children w/ SB Myelo, and all things we have experienced or could / will experience with Ella Mae. As we’ve often found ourselves saying these past few weeks, the blessing of having been through this before with Ella Mae is that we have a good idea of what’s coming. The curse of this time around, ironically, is that we have a good idea of what’s coming. :) It’s a double-edged sword.

What is the life-expectancy of a child born with SB?
The general statistics for the life-expectancy of children born with SB Myelo are increasingly positive, with some studies showing as many as 75% living well into their late 20’s, possibly even early 30’s. While the needs for medical and assisted care are normally very high, this is a much better outcome than just a few years ago thanks to advances in medicine, treatment, and technology. To be honest, we don’t dwell on this one much.

And there are complicating factors that play into each individual case. For instance, greater than 33% of children born with Arnold Chiari II Malformation develop symptoms of brainstem damage within the first 5 years, with death frequently occurring due to respiratory failure. In addition, 15% of babies born with AC II die within the first two years of life. Yadi yadi yadi. Here’s our statistic: 1 in 1 people who are born, die, and we know the Author of Life, and He has each of our days perfectly numbered (including Ella Mae’s and this little man's). That’s all we need to know. Moving on...

Will Sharon be on bed-rest?
Thankfully, while she does not appear to need bed-rest at this time, she will need to move over to Seattle 2-4 weeks prior to little-man’s arrival. Since they plan on taking him 4 weeks prior to our original due-date (May 13th), that means she’ll probably move over to Seattle around the 3rd week of March.  However, her bed rest requirement could change at any time, so I’m the official “take it easy” police at our house.

Will the new little man have to undergo any surgeries?
Yes. The first will be to close the gap in his spinal column. After he is born via C-section by a team of specialists at UW, he and I will go for our first ambulance ride together over to Children’s Hospital (me and Ella Mae already had ours:). This will be a great Jack Bauer moment, where my boy gets to run his first code. Pretty excited about that. After stabilizing him, they will probably operate within 8-10 hours of his birth. Yeah. Crazy.

Then, there is more than a 90% chance he’ll have to be “shunted” within the first 6 months (Ella only made it two weeks). This brain surgery normally takes a few hours, with a 10-14 day recovery period. Future surgeries will all depend on the varying degrees of his complications (for instance, some children have 30 surgeries going into their teens...Ella Mae has only had 3, of which we’re very thankful!)
 
How long will y’all be in Seattle?
Including the time Sharon is over there post-birth, we’ll be gone for probably a minimum of 6-8 weeks, with the potential for it being longer. We’ll just have to wait and see.

How are you and the kids doing?
We’re doing well. God’s grace has been real. It hasn’t been easy, and the news has hit our children sorta hard, but by God’s grace we’re working through it together. I’ll address this in more detail on Sunday at our gathering.

How come you waited so long to let the body know and get the saints praying!?!
To be honest, we have simply needed a little time and space to chew, process, and prepare ourselves mentally and emotionally for this next leg of the journey. The smaller the group we did that with, the easier it was for us. We’ve been reminded through this time how fragile us humans really are...it doesn’t take much to rock our little boats and deplete all of our reserves.

But probably the biggest reason was simply that we have wanted to carefully think and pray through how to talk to our kids about this. That was really our greatest priority. And since we couldn’t make it public until we’d told them, that process ultimately controlled our timeline.

Is there anything we can do to help?
This is often the first question we get asked. We just love being surrounded by jump-in, get-er-done, sleeves-up friends and family. It makes us feel very loved.

However (not to frustrate all you type-A’s :), there’s not really a whole lot to do at this point but wait. While this is a serious race we’re in, it’s much more of a marathon than a sprint. The real burden and work of this will come in 6 months, 4 years,10 years. Right now, things are quite easy, as it hasn’t “affected” our physical lives as much as it will in the future.

Having said that, if you’re just dying to help, here’s a few things that you could do:

  • Pray. And we’re not just saying that because that’s what Christians are supposed to say. We very much feel the need for strength, wisdom, insight, and grace as we walk this road, especially with our children. Your prayers for us in this area (praying specifically for them and how they view this in relationship to God’s nature and character) would be so appreciated. And for Sharon’s continued health in the pregnancy.
  • Encourage. This is an easy one, since all of you are pretty amazing at that. All we ask is that you  funnel it through email or Facebook and not our phone, and that you know that while we’ll read every one (probably several times), we probably won’t be able to respond. This is nothing personal! It’s just a numbers-thing. So feel free to write, encourage, pray, as you do so often and so well, yes and amen, and know that we’ll appreciate every one..we just won’t be able to respond. Thanks for your understanding.   


I think that’s it for now. To be quite honest, a huge outpouring of help would probably be less helpful right now. There will be a time for that I’m sure, so for practical needs, as they arise we’ll make people aware through our Caring Bridge site (see below). Chris Speten, our lead deacon, will also always know the current status of our needs, so if you have any questions, you are always free to contact him.

How can we get updates?
We will start a Caring Bridge site as we get closer to the main event. This will be the one place where we will post all of our updates, as well as the place where you can direct your thoughts, comments, prayers, and inquires for lending a helping hand.

What will this mean for the church?
Thankfully, as we say very often, this is Jesus’s Church. Levi reminded me this morning when I asked them during family devotions, “Who is the Lead Pastor of GCC?” “Jesus is!” he said, “You’re just one of his little helpers.”

Well said, son.

And thankfully (very thankfully) Jesus has many “little helpers”. I believe that GCC is going to see some of its most fruitful and productive days yet during this time I’m away, simply so Jesus can remind everyone again that it’s not about a person or leader, but His Spirit and His Gospel and His Glory. When He said, “I’ll build my church”, He meant it.

It will also probably mean that more people will need to step in and help with the family mission of GCC. But I’m not worried about that either. This body has shown time-and-again it loves to step into the gap and serve. And as you know, we have many competent leaders at GCC ready and willing to step in and swing. God has given many gifts to the body. This time will only serve to highlight the beauty of that truth.

Preaching
Practically speaking, it will mean I will not be in the pulpit for a season of time in order to serve my family and tend to the home-front. We’re not exactly sure when this will start, but we’re thinking it will begin the latter part of March, and extend through most of April and May (which is more good news...a chance to hear someone else for a change!) Seriously, I regularly hear “Hey man, when are Adam or Kent or Carey gonna throw again?!” God has given us many gifted men to preach, and I am personally very excited to hear and learn from and be challenged by these men as they open God’s Word for us.

As well, we’ve been working hard at putting systems in place that can allow mission and ministry to continue powering forward. Make no mistake, if we’ve built this thing so that it all comes to a grinding halt when one man’s gone, we’ve made some serious mistakes. Thankfully, the leadership of GCC has always had a vision for multiplication and de-centralized mission amongst the true ministers of the gospel...you! Therefore, I am completely confident that the ministry done by the people of GCC will continue in   its effectiveness for the gospel in our city. It’s “mission advance” for the church, no matter who’s on the field (and often in spite of who’s on the field! lol).

Slow Start
And you may have noticed, we’ve been a little behind in rolling some things out this winter...the annual report, membership training, Gospel Communities, etc. That’s all my fault, as my attention as been a little averted and the elders and leadership team and I have simply been attempting to work out a schedule that allows me to be gone and not bury everyone else. That, along with the Acts 29 event we pulled off last week, has put us a little behind.

With that said, your continued prayers for the elders and deacons would be much appreciated. There is no doubt they will have to pick up and carry a portion of my load in my absence. They are excited and ready to do it, but it will mean work. Thankfully the Lord has given these men and women good engines. They will lead us well. (And let’s not forget, Pastor Adam is adding a fourth arrow to his quiver in April as well! This is no small thing, so his time will be limited in this season too).

Maybe the Most Important Thing I’ll Say
And lastly, Sharon and I would ask for your help in how our children process this information. We are very sensitive to how we talk with them about it, as they very much key off our lead.  We don’t hide the facts or sugar-coat them, but we talk about them bathed in the light of God’s goodness and glory. This isn’t tragedy. This is opportunity. This isn’t horrible mistake. This is a gift of grace.

So we’d simply ask that you be very careful what you say within ear-shot of Ella Mae and Levi. They are both very perceptive and intuitive. They pick up on everything. Not that it would ever happen, but it would not be helpful for someone to come up to Sharon, crying, and be like, “Oh my, we’re so sorry your boy’s going to be born with Spina Bifida...what a terrible thing to have happen.”

As loving and gentle and sweet as my wife may appear to be, this sort of comment will most likely elicit a quick flying judo-chop to the throat before you finish getting all the words out. So, for the sake of self-preservation, we’d simply ask that you be extremely careful with what you say within earshot of Ella Mae. (There. I’ve said it. I am now released from any liability for what happens to you loose canons out there should you slip up around my wife and the kids..may the Lord have mercy on your soul...lol).

But in all seriousness, and please hear my heart here...this is a really big deal to us. Yes and amen, feel free to approach Sharon and I with encouragement and prayers and hope-filled words of faith and tears of compassion...yes yes yes. We love it when you do that, and you do it so well! We’re not hiding any of this or pretending it’s not hard or ignoring its ramifications. Of course not. We don’t mind talking about it either. Not in the slightest. We’re looking it right in the eye, and in that there is gladness and there is grieving.

We’re simply asking you be careful and discerning of what you say, as there will probably be little ears close, and we would never want Ella Mae to think or infer from a comment made that being born with Spina Bifida is horrible.

Sure, it’s hard. But God is good. She is not a mistake. We wouldn’t change a thing about how He made her. And neither would we this little boy. God is in the heavens, does all things well (Ps.115:3), and that’s what we want them to hear from us and the body. Helping us wash them in the refreshing truth of a God who can be trusted, and surrounding them with people who see the arrival of our little man as exciting and opportunity and a gift and a reason for celebration will serve our family well. Thanks in advance.

Reading This Post...An Act of Love :)
Well, if you’ve read this far, that in itself is an act of love, for which we sincerely thank you. We are excited for all the Lord has in store for us on this new journey. We have no illusions: it will be difficult. Hard. Painful. Stretching. It will change our life, and those of our extended family, forever. Two children with significant and ongoing medical challenges due to severe birth defects will not be easy. We get that. This is big. And it’s “only changing everything.” But we believe that all of the above is God’s grace to us. So, even in our (sometimes) sorrow, there is rejoicing. Even amidst the (sometimes) lingering questions, there is an air of excitement. God is on the move. He is in the heavens. He does all things well.

For those who’ve been on the receiving end (or should I say non-receiving end?) of a few phone calls, texts, or emails directed to me over the past several weeks that have gone unreturned, I apologize. With more focused attention and energy at home, I have not been able to keep up with those as well as I’d like (read this as my official apology, not as “don’t worry, I’ll get back to you soon!” Probably not going to happen...)

Blessings to you all. Thanks for your continued support in prayer. We could not think of a better family of missionaries to be linked together with as we walk through this time. Your generosity blows us away. Your love for Jesus and others humbles us. We regularly learn from you, and always thank the Lord for you. May He get His due glory from us in these circumstances, to again show the world that knowing Jesus is better than, well, anything.

Behind a frowning providence, He hides a smiling face
And so we stand in confidence, with hope in future grace.


Josh and Sharon, Ella Mae, Levi G, Amelia Claire, and ????

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