Tuesday, March 20, 2012

Hydrocephalus

Several people have asked me questions about Micah's hydrocephalus, and I'm guessing several dozen other people are wondering but worried that asking might offend me if they ask.  Just so you know, I don't mind answering questions about his hydrocephalus at all, and if you have questions, please feel free to ask.  Just please be aware that if my children are nearby, they ARE listening, so please be mindful of their tender hearts.  Let me tell you a little bit of what we know.  


hy·dro·ceph·a·lus/ˌhīdrōˈsefələs/

Noun:
A condition in which fluid accumulates in the brain, typically in young children, enlarging the head and sometimes causing brain damage.
Synonyms:
water on the brain


Micah was diagnosed with hydrocephalus as an infant.  Because of this and his abnormal ear formation, he was abandoned at the hospital and sent to live in an orphanage.  In many countries of the world this is still an all-too-common story.  Families abandon their children for different reasons.  They are usually encouraged by doctors and medical staff to give their children up, and they are assured that the child will be better off "with his own kind."  They are pressured to leave the child behind because the child will surely be such a "burden" to the family.  There is very little support for parents of children with special needs in these countries.  Medical care is expensive, and the quality of care is questionable.  The parents would be facing shame and shunning from friends and family, because to have a child with special needs is still all too often considered an embarrassment.  
I wonder about Micah's biological parents.  A young married couple.  Their first baby.  Their son.  And they willingly signed away all rights to him as soon as they knew he was imperfect.  I wonder who they are.  I wonder if their hearts were broken to sign those papers, or if they left him behind and never looked back.  I do know that they never visited him, and they did not have any interest in meeting us or seeing Micah before he left the country forever.  I pray for them.  They may not know what a treasure they are missing out on, but I know that they are missing out on an adorable, dimpled grin and an infectious giggle every day.  

From The National Institute of Neurological Disorders and Stroke:

WHAT IS HYDROCEPHALUS?
The term hydrocephalus is derived from the Greek words "hydro" meaning water and "cephalus" meaning head. As the name implies, it is a condition in which the primary characteristic is excessive accumulation of fluid in the brain. Although hydrocephalus was once known as "water on the brain," the "water" is actually cerebrospinal fluid (CSF) — a clear fluid that surrounds the brain and spinal cord. The excessive accumulation of CSF results in an abnormal widening of   spaces in the brain called ventricles. This widening creates potentially harmful pressure on the tissues of the brain.
The ventricular system is made up of four ventricles connected by narrow passages.. Normally, CSF flows through the ventricles, exits into cisterns (closed spaces that serve as reservoirs) at the base of the brain, bathes the surfaces of the brain and spinal cord, and then reabsorbs into the bloodstream.
CSF has three important life-sustaining functions: 1) to keep the brain tissue buoyant, acting as a cushion or "shock absorber"; 2) to act as the vehicle for delivering nutrients to the brain and removing waste; and 3) to flow between the cranium and spine and compensate for changes in intracranial blood volume (the amount of blood within the brain).
The balance between production and absorption of CSF is critically important. Because CSF is made continuously,  medical conditions that block its normal flow or absorption will result in an over-accumulation of CSF.  The resulting pressure of the fluid against brain tissue is what causes hydrocephalus.

What causes hydrocephalus?


The causes of hydrocephalus are still not well understood. Hydrocephalus may result from   inherited genetic abnormalities (such as the genetic defect that causes aqueductal stenosis) or developmental disorders (such as those associated with neural tube defects including spina bifida and encephalocele). Other possible causes include complications of premature birth such as intraventricular hemorrhage, diseases such as meningitis, tumors, traumatic head injury, or subarachnoid hemorrhage, which block the exit of CSF from the ventricles to the cisterns or eliminate the passageway for CSF into the cisterns.
If Micah had been born in the US, he would have had a shunt inserted into his brain when he was days or weeks old.  His hydrocephalus would be a non-issue, and he would have most likely had a very typical childhood, except with more follow-up appointments than an average kid (to monitor the shunt) and perhaps some therapy to address delays.  Children are growing up in the US with hydrocephalus with very few effects.  Brain damage, developmental delays, and increased head size are avoidable if a child receives proper, prompt medical care.  
However, Micah did not receive a shunt when he was diagnosed.  In his country, babies with hydrocephalus are often expected not to live long enough to bother with.  Or even worse, it is decided that they are just not worth the effort and cost of surgery.  They are left in cribs for their undoubtedly short lives without treatments and therapies, without anybody really even giving them a chance.  It is a miracle that Micah lived as long as he did.  And it is a miracle that he did finally get a shunt.  About four years too late, but at least somebody finally saw the sparkling gem that this boy is and decided to save his life.  Because of that shunt, the pressure is no longer building up inside his skull and further damage to his brain has hopefully been halted.
One of the most common questions that I am asked is whether anything can be done about the size of Micah's head.  I was wondering this myself before I started researching hydrocephalus.  It would seem that if the shunt is working, then his head size should decrease, right?  Well, actually the bones in Micah's skull were pushed outward by the pressure of the fluid while his bones were still forming and fusing together.  The size of his head is the size of his skull, so at this point, the damage has been done.  The CT scan showed that there are large pockets of fluid in the center of his head, and his brain has been pushed to the outside as fluid has built up.  
He can, however, grow into his head as time goes by.  His head is the same circumference as mine.  Right now his body is very small and weak, and he has to work very hard just to lift his head up.  As he grows in size and strength, our hope is that the size and weight of his head will become easier for him to manage and he will begin to increase in mobility.
There are also options for reshaping his skull.  Because he laid in a crib for five and a half years, his head is quite flat and lop-sided.  We will be meeting with a surgeon to discuss whether he is a good candidate for skull-shaping surgery.  There are also helmets that can help to reshape the skull that we will be considering.  
As far as whether the hydrocephalus will shorten Micah's lifespan, we do not know that either.  As long as his shunt continues to function properly, his life should not be in danger.  If his shunt malfunctions (perhaps I should say WHEN, since shunts are notorious for malfunctioning) he will require immediate surgery to repair or replace the shunt.  This would be a life-threatening situation.  This could happen at any time in his life.  We know the warning signs to watch out for.  At this point, Micah's health is stable and we do not know what to expect as far as how many years with Micah the Lord will gift us with.
Another question I have been asked is whether Micah's developmental delays were caused by the hydrocephalus or by the extreme neglect he has suffered, and what sort of abilities he will have as he grows older.  That is a tough question to answer. We can see on the CT scan that significant brain damage has occurred from the hydrocephalus.  However, we are also aware that the human brain is a remarkably resilient wonder crafted with precision by the perfect Creator.  Brain plasticity (the ability of the brain to reorganize and build new neural pathways) is amazing.  
We will be working with Micah on intense therapy all day, every day, and giving him every opportunity to be the best Micah he can be.  And we will love and adore sweet Micah whether he remains just where he is for the rest of his life, or whether he learns to walk and talk and read and play ten musical instruments.  He is our beautiful son, and we feel so blessed to be his parents.  

17 comments:

Stephanie @ Ralphcrew said...

Thank you! You answered many of my questions. I love Micah, and have for a long time.

Christine said...

He has a beauitful smile! I am so glad to hear that he already has a shunt. I can't wait to see him blossom. Since he no longer needs a NG tube, will he still need a feeding tube?

Jolene said...

He's got such a killer smile! Our little man waiting for us in China has hydrocephalus along with Spina Bifida but he was blessed with a shunt shortly after he was found.

Praying for your two little men as they heal and grow!

Anonymous said...

This makes me so angry. Micah and so many other kids like him have to suffer for the rest of their lives because people with the power to help them couldn't be bothered.

At least there are people like you :)

lotsofsparks said...

Just a prayerful mom stopping by to see how your new treasures from afar are doing. How reassuring to know that you are so well-researched...yet your love resonates in all the "regardless if he ever" areas. He is a gem, he will light up your lives, and I'm so glad God saw fit to give him to you. May He give you wisdom for the decisions that lie before you, you are a tremendous mom, and I have blessed by you this day.
Laurie Sparks

Milena said...

Thank you for answering! I'm one of those who read but never comment (sorry!) and I have wondered but been afraid to ask....

Micah surely has very beautiful eyes and an adorable smile!

Cara said...

I love, love, love your family! I remember the boys from RR before they had a family and it is spectacular to see them as your sons. I hope you don't mind me following along, your writing is great and I am learning a lot. My husband and I hope to adopt as soon as we can; families like yours are teaching us so much.

Nealy said...

Perfectly stated; beautifully expressed, sweet Mama. You have a GORGEOUS family!

Anonymous said...

Thank you for sharing Micah's story and answering so many questions. I am so, so tickled to see that sweet smile emerging from that once sad, expressionless face. A child I know also has this condition which was treated late as well. He is making progress with OT/PT and spends time in a "stander" and loves his special swing (just his size)so that he can spend time outside with other children and not just be an observer. I know nothing about what's available in your state, but recently, information became available to this child's caregivers that an agency in our state offers equipment to children (who might not otherwise receive it) on a loaned basis. They then exchange it when he outgrows it and loan it to another child and offer him something else if they have it. This was wonderful for this child as he does not have access to a lot of things otherwise. It is my prayer that such opportunities will be available to Micah and we will see so much progress. However, I think so much progress has already been made....just look at that smile. Thank you God!!!

Amber said...

I know children with spina bifida have an increased chance of also having hydrocephalus. I'm a "Guardian Angel" for Konner 15H, who has SB. Just from his picture, I'm afraid he also has hydrocephalus. Thank you for this post.

I love the last picture of Micah smiling!

Amber said...

I know children with spina bifida have an increased chance of also having hydrocephalus. I'm a "Guardian Angel" for Konner 15H, who has SB. Just from his picture, I'm afraid he also has hydrocephalus. Thank you for this post.

I love the last picture of Micah smiling!

Jamie said...

Thank you for explaining all this! He is beautiful and i'm so happy you are home with him now!

Anonymous said...

This is so beautifully put - especially the last part. Who could ask for any more than unconditional love for any child? Your beautiful family is truly an inspiration and I'm hoping for the very best for all of you!

Doug Marks said...

Very beautifully explained.... we look forward to meeting him and his brother when the time is right! :-)!

Anonymous said...

I have hydrocephalus and Spina Bifida. the shunt I had when I was a baby finally quit when I was 12, I had it replaced, and am now 30. so with the proper care we can have a good life with our conditions. Good luck with your family.

Susan WD said...

How can anyone not see that this little boy is absolutely beautiful? Thanks for the explanations and I hope he has a long, wonderful life with you all.

Star said...

Thank you so much for sharing your story and all about Micah. I praise God for your family :-)