January 24, 2009 disruption, Family Stories, neurofibromatosis, NF1 0 Comments

By Kristin, mother to Abby from China

In September 2005, we found ourselves DTC again for another beautiful little one from China. Having returned with Anna Grace (our NSN child) in July 2004, we knew the typical process involved. Shortly after becoming DTC, my husband brought up the idea of a special needs child. His feeling was that all children need a home. Why not ours? Our extended families were a bit uncertain. After all, in the US, special needs means special education. Not true in the Chinese adoption world.

After much thought, we submitted our Medical Conditions Checklist to CCAI in January 2006. Just one month later, we had a phone call. Now, mind you, we were in the midst of moving to a new house, Anna Grace (2.5 years) was in the hospital for RSV, and life was crazy. So why not add a referral??

In fact, I had made a comment to Dave that, if we got a phone call during all this chaos, my head would explode. So when he called me at work (when he was home with Anna Grace after being in the hospital), he said, “Are you ready for your head to explode?”

And I knew we had a referral.

The little one we were called about was 19 months old and from Jiangxi Province, just like Anna Grace. Her special need? No one was sure.

The referral paperwork said Nerve Fibromas. Our agency did further research and thought it could be Neurofibromatosis or NF1. This is a pretty serious illness. There are many kids out there with this incurable disease. Could I handle this?? Dave’s response? We can do more for her in the US than she would get otherwise.

True, very true. But was I nervous?? Absolutely. Could I handle it? What are the medical implications? What is the overall outcome? What are the potential issues? All things anyone would ask upon a referral call.

Honestly, I was scared out of my wits. But my husband was the calm one. And I have the early childhood/special ed/psych background! Sometimes I think less education is better. You don’t get so nervous.

Our teens were very excited about the new referral and took her picture to school the next day…… well, our daughter did. Teen boys don’t do that… at least in our house.

Sure enough, we accepted Abby’s referral the next day which happened to be —— Valentine’s Day. Our sweet baby was ours on Love Day!

The possible diagnosis of NF1 came from the Chinese doctors in Beijing. As it turned out, Abigail was referred to another family once before. But she had lots of café au lait spots on her body which worried the couple. As advised by their agency, they had Abby checked out by the doctors who gave the possible diagnosis of NF1. Multiple café au lait spots can be indicative of NF1.

Talk about a decision to make. What to do? This was not something they envisioned or anticipated. After three long days, they made the decision to return Abby to the orphanage due to the unknowns. It was a heartbreaking decision for them.

Could I say I would not have done the same? My heart says no… but in that moment…

All I know is we would not have our Abby without the disruption.

The medical exam in Guangzhou was interesting to say the least. The doctors all huddled around Abby trying to figure out why her paperwork said Nerve Fibromas. They found no indication of these on her body. Our guide finally explained that it may have been a mistake in paperwork. We had to state that we were still adopting her as a special needs child even though the paperwork didn’t match.

A few tense moments there. I was concerned that they would deny her visa since the paperwork wasn’t correct.

Fast forward to home: Our pediatrician checked her out and said she is perfectly fine. The marks on her body which “indicated NF1” are truly birthmarks which have faded in time.

This is the same info our agency received from the orphanage just before our acceptance. Birthmarks which faded over time.

But because that was the initial reason for “refusal of adoption”, Abby was placed on the SN list for her orphanage.

Blessings for us or Abby would not be in our house.

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