20 Weeks Pregnant :: and after just 48 hours, our lives have a completely different path forever

Well, this was certainly not the post for this week that I thought I would be writing.  This week was supposed to be all about finding out Cletus’s gender, confirming that the subchorionic bleed was gone, and to be elated that our little one has made it this far so well.  Within 48 hours time this week, however, all of this has changed.

This post does not have any pictures, it is long, and I will forewarn you that going forward my posts will involve decisions that Graham and I need to make that you may not agree with religiously, politically, or spiritually.  I never thought we would be in a situation such as this, but know that I will continue to be as open and honest about our experiences as best I can because this blog still provides a therapeutic outlet for me {I would write even if my mom was the only one that read it}.  Even if you may not agree with some of our choices, I want to emphasize that we are doing whatever we feel is best for this child now and in the future.

First, though, I can say {with excitement} that Graham and I found out that we are expecting a little boy.  We do have his name picked out {we have for the past four years}, but it is something Graham and I would like to keep for ourselves.  So, for now, we will continue to call him Cletus here and in public!

Okay…onto the hard stuff.

As I sit here, I am not even sure where to begin with what has transpired this week.  It all happened so fast that I think I am still in shock.  But, I guess I will just start from the beginning!

On Tuesday we went in for the routine 20 week ultrasound.  We immediately found out Cletus was a boy {it was glaringly obvious} and then the midwife performing the ultrasound continued to do all of the normal measurements.  Everything measured just fine, but we were sent home and told that we had to come back on Thursday because she couldn’t get an appropriate angle on the ventricles in the brain and would have to wait until the baby was in a better position.  All I heard was that everything else was normal, so it didn’t even cross my mind that she may have actually seen something and wanted to be certain before alarming us.  So I spent the next couple of days just feeling excited.  Excited to be having a boy that I thought was perfectly fine.

Some people might say that they would have preferred to know right then and there that something may be wrong.  But the more I think about it, I am appreciative of the way this was handled.  The doctors at my clinic wanted to be 100% sure before sending us down the path we are now on and it meant I got to have two days like I have never had before.  We got to have that experience of imagining life with a little boy.  Teaching him to climb trees, to dig in the mud for worms, and to start calling him by his real name {he is no longer just Cletus}.

These thoughts and feelings will not go away.  We will still be imagining life with our little boy and we will still call him our son and are still excited for a child.  But now there are complications and worries that go right along with that.  For two days, though, I didn’t have to think about complications or worry.  I had two “normal” days….the feelings one dreams of having when they get to this point in a pregnancy.  It is not something I have been afforded much, to just be “normal”, but I had it for two days and I will cherish that forever.

Thursday’s morning ultrasound came much quicker than I had expected.  But, I got to the hospital in a cheery mood, looking forward to getting an extra peek at Cletus.  It took only a couple of minutes, however, for the midwife to start explaining to us what she was seeing.  She had even asked for the senior OB to come in and review the ultrasound with us because of what she was seeing.  What they found was that the ventricles in the brain were too large and that there appeared to be something abnormal with the way his hands were developed….this was on top of the fact that they hadn’t seen his hands or arms move in either ultrasounds.  Because my clinic does not specialize in high risk pregnancies such as this, they needed to refer us to a hospital that did in order to get a confirmation on what they were seeing.  Luckily, my OB does have a lot of connections with the high risk pregnancy clinic and doctors at UW’s hospital system, so we were able to get in to see them right away.

The appointment in Madison was one of the most emotionally draining times in my life.  The ultrasound {which took an hour and a half} was followed by a meeting with a genetic counselor and then also a discussion with the Perinatologist {a high risk pregnancy specialist doctor}.  All in all, we were there for over five hours.

They did confirm and clarify what my doctors here in Beaver Dam suspected.  Cletus was diagnosed with having Arthrogryposis Multiplex Congenita (AMC) in his hands, wrists, and elbows and Hydrocephalus of the ventricles in his brain.  Five hours was certainly not enough time for us to fully understand what these two things mean, and we have plenty of questions, but here is what we understand thus far:

First, the AMC.  Basically, Cletus’s hands, wrists, and arms are locked into place {his hands are up by his mouth, to give you an idea on how he is positioned}.  It does appear, though, that at this time he can move his shoulders.  The doctors told us this will not get better before birth, but there are surgeries and physical therapy that can be done that MAY potentially give him some mobility within these joints and appendages.  We also learned that AMC is not a condition, but rather a symptom as a result of some other underlying issue.  What caused the AMC to happen is what we are still trying to figure out.

Then there is the Hydrocephalus.  Basically what is happening is that spinal fluid is pooling {and building up} in Cletus’s brain space.  With Hydrocephalus there are a million different possible outcomes and it will all depend on how the ventricles progress over the remainder of the pregnancy.  At minimum, Cletus will probably need a shunt put in place in his head shortly after birth that will allow the fluid to drain {since it will not on its own, most likely for his lifetime}.  The problem is that we will not know the extent of the cognitive damage that will be caused by this extra pressure from the fluid and the fact that the brain may not be given all of the space it needs to grow and form.

We were told that Hydrocephalus is also a symptom of an underlying condition.  Either the drainage system is being blocked or didn’t form properly {which would allow for the best recovery when Cletus is born} or there is an underlying chromosomal issue.

Because of the fact that there is Hydrocephalus AND the AMC {and they cannot see something obviously blocking the drainage in the brain}, the doctors are leaning towards there being a chromosome issue {thus causing both the AMC and Hyrdocephalus} that is related to the central nervous system and its development.  What this means, since I am only at 20 weeks and have 19 potential weeks of development to go, is that things could get much worse.  Cletus could end up with AMC in his legs and jaw bone and back and the Hyrdocephalus could develop from a mild case {as it is considered now} to a more severe case.

With this, Graham and I have absolutely no way to prepare for what is to come.  Either things do remain as they are now and we would be faced with the issues in his arms and possible cognitive disabilities, or things get worse to the point where Cletus may only be given a day, a month, or a year to live.  Then there are all the possible outcomes in between.  Maybe Cletus lives a long life, but never develops past the three month old developmental level and is bound by wheelchair his entire life.  Or, maybe the AMC spreads to his legs and is wheelchair bound, but the Hydrocephalus doesn’t have as big an impact and he is sharp as a tack.

What the doctors are trying to do for Graham and I is to determine {as best they can} what chromosome issue may be causing this.  Because once that can be determined {if at all}, there may be additional issues to consider.  For instance, if Cletus has a chromosomal issue such as Trisomy 18 or a Neural Tube Developmental Disorder in the brain, spine, or spinal cord such as Spina Bifida or Encephalocele, then the doctors may be able to give us a better idea on what life for Cletus will be like {but it will most likely not be a good outlook given the symptoms already showing}.

At our appointment, we did go over our family genetic and health history with a genetic counselor and based on that, she does not believe this to be genetic or something passed on from one of our relatives.  And because they were not able to see something physically developing incorrectly {other than the impact of AMC and Hydrocephauls}, they are leaning towards this being a chromosome issue.  In other words, an unlucky break.

This week we go in for an appointment with the Perinatologist, a fetal and pediatric neuro specialist, and an orthopedic/physical therapy specialist.  I will have a fetal MRI done, with emphasis on the brain, to see if we can find anything.  I will also be having a fetal echo cardiogram done to just confirm the heart is okay {it appears to be on the ultrasound, but they always want to make sure the heart is still going strong when other issues are present}.  At this week’s appointment, I did do a blood test that screens for chromosome issues such as down’s syndrome or Trisomy 18.  Depending on those results {or maybe even sooner as the results can take up to two weeks to come back}, I will most likely also have an amniocentesis done that can, with certainty, rule in or out some things.

As it stands right now, if we were fortunate to have things remain constant and not get any worse, Cletus would be looking at a stint in the NICU after birth, multiple surgeries {and follow-up surgeries}, and then loads of physical therapy.  I was told not to expect to be at my best friend’s wedding that is on August 22nd {with the assumption Cletus is born on July 28th at 39 weeks}.

The reason for the urgency to gain additional information, and to possibly determine the cause of all of this, is the fact that Graham and I do have a choice.  But legally only until I reach the 24 week mark.  Up until the 24 week mark, we can decide to terminate this pregnancy.

I will start the next part of this post by saying that Graham and I want nothing more than to have our son and we will take whatever measures we can to give him the most amazing life possible.  What we are struggling with, and why we do still feel there is a decision to make, is that we do not want to have this great desire for a child cloud the fact that he may suffer and suffer for his entire life, however long that may be.

If the doctors could tell us that Cletus would not develop any further issues than what are present now {this would not be possible to guarantee, by the way, this is just a what if scenario}, then it would be an easy decision to make.  Based on statistics and treatment options, Cletus will never have a “normal” life with his current issues, but he would have a very good chance at having a happy {almost perfectly “normal”} one.  But, Graham and I have to decide if we want to take this risk.

If we decide to continue on in the pregnancy, what if things get so much worse that Cletus is given only hours to live and those hours will be spent in pain.  Or what if the diagnosis appears to be that Cletus will never understand what is going on around him, will never really feel our love, or be able to connect in any way because his brain will never fully develop.  Or the ACM gets so bad that he is in constant pain all day every day.

No matter what decision we make, our lives will be changed forever.

To have Cletus in our lives drastically changes what we had envisioned for life with a child {not necessarily a bad thing, but our lives will certainly be different than simply climbing trees and digging in the mud}.  We will have to make decisions on where to live based on specialized health care that he may need, therapy centers, what programs are available at the school for special needs children, what programs are available in the community, and so on.

On the flip side of this decision, we would have to live with the guilt of never really knowing if our decision was right or not.  We would never know what type of life Cletus would have had.

At this point, we are not certain what to do.  We do know with certainty that we will be basing our decision on what we think is best for Cletus.  Not what is best for me, or Graham, or what any other person may think is right {even though our decision will impact our family and loved ones}.  There are a few more tests to be done, that MAY give us a clearer direction to take, but as of right now we have less than three weeks to decide.

How in the world does someone make such a huge, life altering decision without definitive information?  Although the past four years has certainly done some to prepare us for something like this, in no way do I currently feel mature or wise or strong enough to make this decision.  Graham and I are leaning a certain way, and it would take quite a bit for us to change what our mindsets are currently at, but what if we are wrong?

I also want to thank those that have reached out to us so far to offer their prayers and encouragement as Graham and I spend the next couple of weeks trying to figure out what all of this means.  At this point, most of my updates to anyone will more than likely come via a blog post as I am still struggling with being able to get words spoken without crying.  If I seem distant, or nonresponsive to any message, this is why.  It has taken me almost half a day just to get through writing this as I have had to take breaks to calm down from crying.

Will post an update after our appointment with all of the doctors on Thursday {or if we somehow find out more information before then}.

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Comments

  1. says

    You and your husband will be in my prayers. There was a time that I also had to make a decision concerning a pregnancy with genetic defect factors. I chose to terminate the pregnancy–a very hard decision to make. I think about this fallen angel often but I know the choice was the right one for not just me but for the other children God had blessed me with. I gave it to God and he lead me through all the pain and sorrow. I know without a doubt that you and Graham will make the best decision not just for Cletus but for the two of you. Listen to your heart…

  2. says

    I’m so sorry for this challenge. I’m praying for all three of you! Words can offer little comfort, so know that above all, you all are cared for and loved so very much!

  3. Jeff Cupery says

    Jen and Graham, thoughts and prayers. I know whatever you decide will be the right thing. Love and support to you.

  4. Christine O says

    My thoughts and prayers are with all of you during this difficult chapter in life. God bless – and feel free to call upon me if there is Anything I can do to be of help during this time.
    Christine O
    Fellow artist friend – faith-filled prayer warrior, too!

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