Thankful We Didn't Know…

April 15, 2012 Diana, heart defect, tethered cord 3 Comments

When we reviewed the file of Emme Jade we knew she had a minor heart defect. She had already had a repair in Shanghai at 10 months old, and our cardiologist was confident her heart looked great!

Fast forward to August, 8th, 2011 when we met Emme in Nanjing. There is only one word for that day, amazing! We had been blessed with so many photos of Emme before we met her, that we knew we were going to be crazy about her. That was an understatement! But, back to this post for now…

That first night in Nanjing with her, I gave her a bath. I noticed the cutest dimple on the bottom of her spine. I also sensed there was something not quite right about it. I added it to the list of things to have checked when we had our first appointment with our pediatrician back home.

In early September we did take Emme to the doctor. She had three things that we all agreed we wanted our surgeon to look at on her. One was that dimple. It turned out to be a “sacral dimple” that needed closure. To do that, Dr. Steve ordered an MRI. In his words, “It’s nothing guys, but I need to rule out tethered cord before I can operate in that area.”

Emme had her MRI a few weeks later, and we were beyond surprised to learn that she did indeed have a “tethered cord.” We were referred to a well-known Neuro Surgeon in our area. My head was spinning, when we found out this news. Honestly, I felt sick… My sweet little girl needed a Neurologist! I did what I do best. I started net-working to find out more about this condition, and to find out more about this doctor. I learned quickly that we had the right doctor for our little girl. I was so thankful for that.. But, this cord surgery was a mystery to me. I learned that some doctors take a wait and see approach to this condition, and some feel surgery is necessary right away.

Our Neurosurgeon was very patient with Jeff and I as he explained Emme’s condition. He made it clear after “Uro-Dynamics” testing that she needed surgery immediately. In her case there had been no damage to her bladder or bowels yet, so our timing was good for her. We also learned that you can’t compare the diagnosis of “tethered cord.” This is not something that only children with Spina Bifida can have. All cases present differently. Anyone can have a cord that does not release at birth. But, often it takes a change in neurological abilities that reveal a problem.

I was blessed to connect with a very special Mom with a daughter from China who had experienced this surgery with her daughter. She helped me to know what to expect.

Emme did undergo surgery for her “tethered cord” on January 26th at Minneapolis Children’s Hospital. What we were told would be a 5-7 day stay was four nights! She was not a star patient in the PICU, but she was a survivor!!!! Trying to keep a three year old down, was not an easy task.. But, we did it.. Post surgery she was home for three weeks while her stitches were in. She did so much better at home! Two months later you would never guess this child had major spinal surgery. She does not skip a beat as she chases her three big sisters around!

We are so thankful that we did not know Emme Jade had a tethered cord when we read her file. I think we would have passed on a child with this condition with the little knowledge we had at the time. However, living through it now, I would do it all over again! But, you see, if God had not put that precious dimple on her backend, we never would have had any reason to check. It was the road map to her future. Thank you Lord!

So, just remember, God may surprise you when you get home with your baby. But, also know that the love you have for them will trump any medical condition. With the right information, and this amazing network of adoptive Mom’s you will prevail. You just have to reach out for it! God does not give us more than we can handle.. He equips us for success!

Emme Jade is still a heart baby. In fact, she was diagnosed with a “Bicuspid Aeortic Valve” that needs to be watched… Another surprise! But, to us she is just our precious baby girl that we love like crazy cakes!!

Blessings on your journeys!


3 responses to “Thankful We Didn't Know…”

  1. Amy Murphy says:

    We had surprises when we brought home our son also. We knew he had bilateral club feet. The surgeon ordered x-rays that revealed a displaced hip. Because of this, she ordered an MRI which revealed a tethered cord! Our son’s must not have been as bad as your daughter’s though: our surgeon said it’s the easiest surgery he does, and our son only spent 2 nights in the hospital. He was the same age as your daughter, though, when he had it done! he’s 5 now, and has 3 more surgeries (one four days ago!) He has no issues related to the tethered cord. I’m so glad your daughter had that dimple and you were perceptive enough to be concerned about it! She’s darling!

  2. Thank you so much for sharing your story, Diana….both on the phone and on this site. Our stories are so similar. I might have passed on our daughter’s file if I knew this additional diagnosis but now we’re walking the road to fix it. Praise God we didn’t know. We LOVE our daughter to pieces.

  3. Jeannie says:

    We checked ‘maybe’ for spina bifida and then we receieved a call on a little girl-I was skeptical because I knew I said ‘maybe’…but when I opened her file-it was instant love and I knos she is my child! I am still scared…and some nights I start thinking back and forth about this need…but God knows better than me…so we will keep walking in this direction to a little doll who waits for us in China. Thank you so much for your blog-God bless you.

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