Just Some Spots: Part 3 - The Test Results

Just Some Spots: Part 3 - The Test Results

“We have Judah’s test results. The test came back negative for neurofibromatosis (NF). The test also came back negative for Legius Syndrome.”

I took a deep breath and silently praised God. We had fervently prayed that the NF test would come back negative. We knew that NF would come with life-long complications such as tumors, chronic pain, and could potentially lead to vision and hearing loss.  

I slowly exhaled and wondered what was next, though. You see, we had also prayed that the test for Legius Syndrome would actually come back positive. Legius Syndrome mimics NF in skin pigmentation only. It is not linked to more complex medical issues or a lifetime of doctor appointments. A positive test result would have been a definitive answer and a non-issue, medically speaking.

“Because he has pigmentary mosaicism, we feel that the best course of action is to run a full chromosome analysis. There are a whole host of chromosome abnormalities that also present with pigmentary mosaicism. We feel its necessary to determine his risk for other health complications that can be associated with chromosome disorders.”

My mind flashed back to the diagram that the dermatologist had drawn me of Judah’s cells forming. He had told me that some mutation had happened in his cells after conception. The pattern of the spots on Judah’s skin showed that the mutation was in some cells and not other cells. This was why we had been referred to the Genetics Clinic in the first place -  because his spots had been deemed a genetic anomaly and not a skin condition.

I didn’t ask the names of the chromosome disorders that they were looking for this time around. I didn’t want to know. I didn’t want to Google. I didn’t want to worry about the multiple possibilities or what that might mean for our son’s future. I knew that I had to stop my mind from going too far down that dark and twisty path. I knew that I could either walk in fear, or I could walk in faith. By God’s grace and through His promises, I chose to walk in faith. “And we know that God causes everything to work together for the good of those who love Him and are called according to His purpose for them” (Romans 8:28). No matter what the tests said, God was good and this was somehow for our good.

“I will put in the order and send the information over to your insurance for pre-approval.”

I knew what that meant. It meant that this test was very expensive. I also knew that it meant that our insurance would deny it. They had already denied the first two genetic tests, stating that they did not cover genetic testing unless it related to the breast or the colon...even in one-year-olds...even when it was deemed medically necessary. Insurance is a frustrating beast to deal with sometimes. Unfortunately, if we hoped to have any sort of chance for a reduced rate from the hospital, we could not move forward with the genetic testing until insurance officially denied the request for testing. Insurance sweetly took the full 60 days allotted to deny the approval. It was one of the most frustrating delays I’ve ever faced....and we had a 5+ year adoption process, so that’s saying something! 

As soon as it was denied, we set up a plan with the hospital and immediately moved forward with the more in-depth genetic testing. We were told that we would have the results in 2-3 weeks. During that time, we continued to pray for the best-case scenario, even though we weren’t sure what genetic anomaly would be deemed “best-case.”

Twelve days later, on a break at work, I heard my phone buzz. I checked my e-mail to find that I had a message from the Children’s Hospital in Judah’s patient portal. Immediately, I logged in and checked the message. I expected it to be just a note to call the genetic counselor at my earliest convenience. What I read instead took my breath away.

“The results of Judah’s chromosome analysis are back and are normal. This makes it incredibly unlikely that he has a chromosome disorder that predisposed him to his pigmentary mosaicism. This is good news, as we do not feel that he has an increased risk for other health concerns that are typically associated with a chromosome disorder. No additional testing or follow up in our clinic is needed.”

I reread it several times. Then the tears started to flow as I praised Jesus in the middle of my classroom. Judah does not have a genetic condition. There are no genetic mutations. We had been released from the Genetics Clinic.

I called and spoke with them about our next steps. They have absolutely no explanation for Judah’s pigmentary mosaicism. It is extremely uncommon for it not to have a genetic link, but there was no genetic link or mutation to be found. We will head back to dermatology next month to have them reexamine his spots, but it seems they may in fact be “JUST Some Spots.” They’re a really rare pattern of spots, but, as someone once said, God may have just painted his skin with some unique artwork. 

We are praising God for these answered prayers. No matter what, God is good, but we are humbled and overwhelmed at the way he continues to work in Judah Mahesh’s life. This child is a walking miracle and a testament to God’s grace and power.

You see, his medical file in India told us that he had a moderate medical condition. This was the only reason we were able to match with him and adopt him in the first place. India is a medical needs or older child adoption program.  We arrived in India to updated medical test results, which told us that he did not have that medical condition. After we came home, we confirmed the results with three more tests. He was either misdiagnosed or God healed him. We were released from the Specialty Clinic.

Judah had a 5 minute seizure while we were with him in India. We were told that it was unlikely that it was febrile (due to his fever) if it lasted that long and had not occurred on the first day of an illness. We were referred to a neurologist. After an EEG, we were told that the test showed normal brain activity. He was diagnosed with febrile seizures, which do not harm the brain (although they are absolutely terrifying to his mama).  He should outgrow them by the age of 5. We were released from the Neurology Clinic. 

At Judah’s first visit with the pediatrician, we learned that Judah had a heart murmur. We were referred to a cardiologist. After an EKG and an echocardiogram, we were told that it was a benign, innocent heart murmur. His heart functions perfectly. We were released from the Cardiology Clinic.

Now, here we are, once again, surprising doctors and being released from the Genetics Clinic. I’m not sure what God has planned for our son, but I believe that it will be big. At the age of 2, he’s already demonstrated countless answered prayers. He’s already touched so many hearts and lives. God has already used his story to inspire and encourage so many people. I don’t know what else God will call him to, but I’m thankful that we will have a front row seat to see it all unfold.

Praise God for answered prayers. Praise God for our sweet son.

The End of a Chapter

The End of a Chapter

Judah’s 2nd Birthday!

Judah’s 2nd Birthday!