Worth It

January 13, 2016 brain damage syndrome, Developmental System, estropia, Family Stories, hypoxic ischemic encephalopathy, low muscle tone, oral-motor delays, speech delay 2 Comments

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The words in Miao’s file were daunting. “Soften lesion of posterior horn” and “softening of bilateral ventricle” and “HIE”. I wasn’t sure how to pronounce them, let alone what they meant. And my trusty sidekick, Google, was having trouble explaining them as well.

I had come across a picture and short description of Miao on a Facebook advocacy page for China adoption. Her file was brand new. She had been posted by an advocate parent from another agency, but I contacted the agency and was told that they were willing to transfer her file if all of the families from their agency that wanted to review her file had passed on it. The likelihood of that happening was very small. There were several families interested, she was quite young, and her needs, though hard to pronounce, didn’t seem to be very significant. Files like hers get snatched up extremely quickly. I asked for her file anyway. I was pretty sure this was our girl.


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Not knowing whether the file would be locked by another family, we took a step of faith and paid the International Adoption Clinic in Houston to review what we had about Miao. “She looks quite stiff on her left side,” the doctor observed after looking over the pictures and videos we had been sent by the orphanage. She went on to tell us that the stiffness could be associated with cerebral palsy, but it would be impossible to know until we brought her home and had tests run. Miao had some other medical needs listed in her file (encephalatrophy, premature) that also would be difficult to make long term determinations on until she was home.

My husband and I discussed her medical issues on the way home from the clinic, but and decided that if her file got to us, it was God telling us that we should move forward.

The following Thursday morning, I received the call that answered all of our prayers. Despite the many, many odds, all of the families had passed on her file and they were willing to transfer it to our agency. The social worker said to me, “I guess they passed because she’s yours.” We agreed and were so excited!

My husband and I finished up the paperwork we needed, held a few fundraisers and saved, saved, saved to come up with the money we needed to complete the adoption process. And then got ready to take our entire family (including a six and nine year old) to China with us. Life was too busy to worry much about what the future would hold for Miao diagnosis-wise.


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Finally, we were able to travel to meet and pick up our little girl in the summer of 2015. She was adorable, and we fell in love right away. We had been told that she was very, very small for her age and expected a tiny baby but were surprised to see what a big girl she was! We noticed delays – she wasn’t walking or talking – but she was crawling around and seemed to be reaching milestones, just at a slower pace.


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After arriving home, we took Miao (now Mabel) in for an MRI to see if any of the diagnoses were accurate from China. The MRI went well and Mabel came out of the anesthesia without a problem so we were released to go home. Because none of us had eaten for several hours, we headed from the hospital to a nearby drive through. As we got up to the speaker to take our order, I noticed that Mabel had become quite quiet and her face and lips were turning white. Starting to panic, I felt and watched her chest… it wasn’t moving. I started yelling at at my husband that she wasn’t breathing, and then she collapsed like a rag doll. Her eyes were still open, but she was completely unresponsive. At that point we sped back to the hospital, praying the whole way. I was pinching her cheeks, yelling her name, trying to listen to see if she still had a heart beat, and began doing compressions because I couldn’t tell. I didn’t want to take her out of the car seat for fear we’d end up in an accident. It was literally the scariest moments of my life. I honestly could not tell if she was still alive or not.

By the time we made it to the ER, she was having seizures. We were immediately taken back, and they cut her clothes off (I thought this only happened in movies!). The doctor put an oxygen mask on her tiny face as well as hooked her up to monitors and then five more emergency personnel rushed in. Then ten. I stood near her head, watching them work, whispering to my unresponsive baby, and feeling completely helpless. I couldn’t even understand half of the things that they were yelling to each other. Finally she began breathing on her own but was still unconscious. The doctor had ordered several labs and discovered that her glucose level was 12. I had no idea what that meant at the time, but now I understand that it was the cause for the seizures, breathing troubles, and unconsciousness. Basically her body was shutting down.

Once they had her stabilized and moved her to the PICU, we were able to speak with a neurologist on staff and get the MRI results much quicker than usual. He said that she indeed has a brain injury and that there were signs that a hypoglycemic episode, like the one we witnessed, had happened before. Maybe even several times. An attack like that at birth may have caused the brain injury as well, but we will never know.

Thankfully we have never experienced another hypoglycemic episode. We have spent the last several months in various specialists’ offices having tests run to find out the reasons behind her severe hypoglycemia (it could be metabolic or have something to do with her thyroid), but we have no answers yet. We may never really have the answers. In the meantime, she doesn’t go for more than a few hours without eating, and we have rescue sugar with us at all times. Just in case.


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Another issue we noticed was that Mabel seemed to have poor eyesight. One morning I took her to the zoo and tried to point out the elephants standing directly in front of us. She looked all around but never seemed to focus on the elephants. So I took her into a neuro opthamologist who looked over her MRI, informed me that she had small optic nerves but that her eyesight seemed normal and told me to come back in a year. I still felt like something was very wrong.

As a second opinion, I took her to a developmental opthamologist who diagnosed Mabel with esotropia and also explained that she basically has no peripheral vision, probably as a result of sitting in a crib most of her life. This effects her depth perception and possibly her walking as well. She will be getting prism glasses to help with these issues next month and may be starting vision therapy this summer.


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Thankfully, we have an amazing team of therapists now working with her on almost a daily basis. Rather than cerebral palsy, the International Adoption Clinic has diagnosed her with hypotonia or low muscle tone. Her brain injury figures into this diagnosis as well. It also causes her to have some feeding issues, mainly with swallowing, so she receives feeding therapy, and then we also have speech, occupational, and physical therapy once a week.


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We are hopeful that with all of the resources we are utilizing, she will be able to catch up to her peers by kindergarten (she just turned 2). Regardless, we know that the Lord has a plan and that she was definitely supposed to be a part of our family no matter her medical or developmental issues. None of the original diagnoses from China seem to be correct, but we’ve just traded them out for new ones.

There are days/weeks when all of the therapy and doctors appointments are overwhelming, but I wouldn’t change a thing. It’s all been more than worth it. God’s plan is the best plan, and I’m so grateful that we followed His guidance and trusted Him.

– guest post by Beth – family photos courtesy of Sabrina Gebhardt Photography



2 responses to “Worth It”

  1. Shannon says:

    Those cheeks….that smile….could she be any cuter? Thank you for saying “yes” when God introduced you to your littlest one. Praying for your strength and perseverance as you learn how to mother this special precious kiddo!

  2. Melissa says:

    An incredible story, Bethy. You are an amazing mom and she seems like one amazing girl! So happy for you and her that you found each other.

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