Unknown to Us; Known to Him

April 3, 2016 agenesis of the corpus callosum, April 2016 Feature - CNS, Central Nervous System, Family Stories, nasal dermoid sinus tract 0 Comments

Our family’s story of adopting a child with neurological and facial birth defects and God’s sovereign grace

When we first viewed our daughter’s medical file, it was brief at best. It had a normal physical exam, and she was meeting all her developmental milestones. Her videos were priceless! They showed a chunky little girl wobbling around the playground sporting an adorable grin and classic split-bottom pants.

What was there not to love?! She was perfect!


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Her diagnosis: polyp on the bridge of the nose; corpus callosum dysplasia; right frontal lobe of brain falx nodules

A diagnosis that came from a CT scan that was not included with her file; a CT scan that was done to investigate the “polyp” on her nose.

A scary, unknown diagnosis.

Despite our best efforts, we could not figure out what her medical need really was. Even Google couldn’t help us out! We concluded that there had to be something lost in translation. Through prayer and with God, we also concluded that this little girl was our daughter. Despite the unknowns, God gave us peace to move forward. From there on out, we agreed there would be no turning back.

“Trust in the Lord with all your heart and lean not on your own understanding.” – Proverbs 3:5-6

Fast forward a month or so, and we were in full force “adoption mode” to bring her home quickly. Our agency was finally able to obtain her head CT report. They pressed us to have an international adoption doctor review it. Although we are thankful for the wisdom of doctors, this report did not offer any new information other than the scary diagnosis that no one knew anything about. To please all parties involved, we did have her limited file reviewed. We were told that her condition had many unknowns. We were informed that an MRI was the best imaging for the brain, but it was highly unlikely that China would do an MRI.

The recommendation was to proceed with caution.

Our agency said we could back out. What?! We had no idea that was even an option. It never crossed our minds! When we submitted our Letter of Intent the previous month, we took that very seriously. Our LOI was the first step in making her our daughter. She was our daughter despite the unknowns.


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Our daughter came home in May 2015. We arranged specialty appointments before she arrived. We knew she would need a thorough evaluation. We started with our pediatrician, and she ordered a brain MRI in preparation for our appointment with neurology. Our pediatrician suggested we also see neurosurgery to determine if she was a surgical candidate. Through all this, we still did not have answers. There were many questions by the medical team.

We met with the neurosurgeon. He explained that the “polyp” could be superficial. There was also the rare possibility that she would require an extensive craniofacial surgery due to possible connections from the “polyp” on her face to her brain. He said we must meet with plastic surgery and his neurosurgeon colleague since he did not feel comfortable with this type of surgery. It took more imaging and many appointments with several specialties before we had answers. There was a diagnosis and a plan. There were still some unknowns, but we trusted that God knew all the details.

Let’s dissect the diagnosis from China….
Our daughter had the rare scenario.
The “polyp” on her face was a nasal dermoid sinus tract that connected through her skull to a tumor in her right frontal lobe.
That tumor was the “right frontal lobe of brain falx nodules.”


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We wondered if surgery was necessary. Could we just leave the growth and avoid a major surgery? Unfortunately, no. The “polyp” was a direct link for infection to the brain.

She required an extensive craniofacial surgery that involved removing the front half of her skull, dissecting out the tract and tumor in the frontal lobe, and then putting it all back together again. It was a scary thought. My husband even grew faint and had to sit down when the neurosurgeon explained how he would have to physically lift her brain up with his hand and take care not to cause damage.

We knew we had to make sure she was in the best hands. We sent her records all over the country. We are so thankful that other institutions were willing to review her records and provide opinions for her care. At the end of the day, God kept us close to home. Our local children’s hospital had a new neurosurgeon. It turns out that he is a world-renowned surgeon and well-respected among his peers.

God knew that we would need this surgeon.
He was the person instrumental in the surgery’s success.
He made us feel important.
He was a gift from God.
We are so grateful for the skills that God gave him.

The surgical team included neurosurgery and plastic surgery. The day of surgery was nerve-racking. The surgeons had some unknown details with their plan. Decisions would be made based upon the findings during surgery. The surgery was expected to take up to 12 hours.

We prepared ourselves for a long wait.

The surgery itself took about 6 ½ hours with an additional 2 ½ hours under anesthesia for a preoperative MRI and prep in the operating room. We praise God that the surgery went well with only minor complications. The surgeons reported that the surgery went as they hoped, and they were able to remove the tumor, connecting tract, and nasal growth. Our daughter spent six days in the hospital post-operatively and was back to normal activity quite quickly. We thank God for his provision and answered prayers during this challenging hospital stay and recovery.


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Now, let’s learn about the other part of her diagnosis.

“Corpus callosum dysplasia” turns out to be agenesis of the corpus callosum (ACC). The corpus callosum is a structure in the brain that connects the two hemispheres of the brain. The absences or malformation of this structure can be the result of a disruption in fetal development or in relation to other birth defects and syndromes. In our daughter’s case, her corpus callosum is missing and there is a fatty tumor in its place. We are planning for genetic testing to provide additional information.

ACC has many unknowns. Here is how our neurologist describes it:

There are kids that don’t even know they are missing their corpus callosum until they hit their head on the playground and it is revealed by a CT scan; there are kids who have severe needs and are fully dependent; there are kids who fall somewhere in between with developmental delays, learning disabilities and seizure disorders.

The doctors don’t know where our daughter will fall in this spectrum. Here is the good news! There is someone who does: our Mighty God! We are so thankful to serve a sovereign God who knows exactly the plan for our girl’s life.


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Our daughter is doing amazingly well. She is meeting most developmental milestones and does not currently have seizure activity. She continues to impress teachers and physicians. Her day-to-day care is minimal in regards to her medical care. She sees her specialists about every six months and has routine brain MRIs to monitor the fatty tissue in her brain.

She is a joy! She is so smart! Her vocabulary is quite impressive for being home just ten months. She loves Minnie Mouse, broccoli, and jumping!

Our daughter is a child of God. We do not know what the future holds for our sweet girl, but we are trusting in God. We thank God for this journey into the unknown. Sometimes God pushes us outside our comfort zone.

We may be afraid, but we obey. Unknowns are scary, but God is in control and they are known to Him.

“When my spirit grows faint within me, it is You who know my way.” – Psalm 142:3


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Resources:
National Institute of Neurological Disorders and Stroke
National Organization for Rare Disorders
National Organization for Disorders of the Corpus Callosum

– guest post by Deanna



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