November 24, 2014 Amy, kyphosis, scoliosis, tethered cord, Tetralogy of Fallot 7 Comments

referralI knew to be prepared for undiagnosed needs when we set out to adopt. We prepared for the reality that a heart condition would be worse than we originally anticipated it would be. While we went through the list of needs that we would consider or not consider we had to imagine that what we would believe would be a mild or moderate need, in actuality would be severe. When our referral came in December, we accepted without hesitation. We knew enough to know to say “yes” to our daughter. We knew just enough.

We had sent her file to the experts at the University of Minnesota international adoption clinic and they responded with their assessment and there were no surprises or reason to be concerned. Diagnosis: Tetralogy of Fallot (TOF), and repaired Tracheo-esophageal fistula (TEF). We learned all we could about TOF and what to expect. She was set to have surgery in China as soon as she was healthy enough. We prayed for that every day – but she never was healthy enough while in China. Her oxygen saturation sat in the 70’s most days but could drop to the 50’s or be as high as the mid 80’s. She struggled with chronic pneumonia, was in and out of hospitals, and even once she was well enough to be prepped for surgery – the doctors considered it too risky. They recommended that she see a breathing specialist because she was very “noisy”. We brought her home in May believing it was just one “special need”. We were wrong. 

At our first cardiologist appointment we were relieved to find out that hers was a very “garden variety case of TOF”. There were no extra concerns, no extra complications. Surgery was planned for June 21, just a month and a day after we returned to the USA. It could not have come soon enough. However, before we headed into surgery we learned that her heart defect, while was at one time the most concerning and time-sensitive – would be “easily” repaired and nearly a non-issue once repaired. It was the previously repaired birth defect that would be something we would learn to adjust to, it would be something that would be present and affect every day, every meal, every breath.  

But it said “repaired” 

A TEF repair saves your life. If it isn’t done soon you will literally drown or die of pneumonia because half of what an infant drinks will go in their esophagus and the other goes through the trachea into the lungs. Our daughter was very sick when she was found at only a week old. She wouldn’t have survived much longer had she not gone immediately to the hospital and had surgery two weeks later. She had pneumonia already at a week old, and once that was under control the repair surgery was done. The repair was done excellently, or so I’m told by our specialists here in the US. As it turns out, though, changing the anatomy of the trachea and the esophagus causes necessary damage that, except for a miracle, causes lasting complications. There was a narrowing, a stricture, in her esophagus which proved to be problematic because food would get stuck daily. The nerves in the esophagus no longer make that continuous chain to contract (peristalsis) and move food down quickly into the stomach. Once food is to the point of her repair – we rely mostly on gravity to do in minutes what should happen in seconds. The trachea takes air to and from the lung. By age 2 the trachea should be rigid like a tube and open. At the point where Grace’s esophagus connected to her trachea, her trachea is “floppy”, it collapses a bit. It is not severe, it is not life threatening but this makes her more prone to infection, noisy breathing, and it is what made surgeons in China uncomfortable operating on her.

This alone was enough to leave us disappointed or maybe shocked; except, we had lived with her for 6 weeks and had seen her endure daily TET spells when her oxygen saturation would suddenly drop and she would just about pass out. We had already, for six weeks, witnessed her lips and toes and fingertips become purple, blue or gray from poor oxygenation. It pushed the floppy trachea and the inefficient esophagus to the back burner until her heart was repaired. We had to learn the best way to prepare her meals so that she both learned to adequately chew and swallow – or what went down came right back up. An ambulance ride, several episodes of scary sounding regurgitation and we were scared enough to be really really careful.  

scoliosisOur surprise special needs didn’t stop there, though. Rewind to the second day we spent with Grace in China. It was the first time we had given Grace a bath and really the first time we had her completely undressed. When she sat down, back towards me, and I unwrapped the towel I couldn’t help but notice a spine that wasn’t straight. Not in any way from either direction. Hello, scoliosis and kyphosis.

This was certainly not something scary like the others but the degree of her curve was obvious and I
wondered if yet another surgery was in her future. Once we were through with heart surgery and she
had recovered it was time to visit the Orthopedic; definitely not on our list when we looked through our referral documents. Other doctors we had seen were already preparing us that she may need spinal surgery which honestly scared me more than heart surgery. We were thrilled to find out that like her other congenital (born with) defects, her scoliosis was caused by a congenital defect in two of her vertebrae. It wasn’t something they would surgically fix and they anticipated it improving some as she grew and gained muscle tone. An MRI would tell us if the growth plates were present in these “hemivertebrae” and we could come back yearly to monitor her spine and her growth.

That was September. 

The first week in October we had the MRI and the growth plates were equal – which was the news we were hoping for. The relief lasted about 2 ½ seconds because the next words I heard were: “but we noticed an anomaly in her spinal cord that we are concerned about. We would like you to make an appointment with a neurosurgeon as soon as possible. She may have a tethered spinal cord.” 

A what? 

Three days later we sat in the neurosurgeons office, a place that certainly was not on our radar 10 months earlier when we were reading our referral documents. His assessment was that there are indicators that point to the possibility of a tethered cord. They didn’t see a tethered cord – just some common things that people with tethered cords have…which for us – was not enough to schedule surgery. She has never had symptoms of a tethered cord and until she does – we will not be having spinal surgery for something that is only a possibility.  

So what do you do when you accept a child’s referral, and begin to prepare for that child and love that child and travel the world for that child and sacrifice and change potentially everything in your life – only to find out there are more unexpected needs than expected needs?

JoyThese are moments when I rely heavily on my faith in a God who misses no detail of our lives. Nothing is a surprise to Him. We knew just enough to accept her referral. Had we known everything at the time of referral, I would like to say I would not have chickened out – but I might have. I’m an expert worrier and “what-if-er”. I could have worried myself right out of one of the best adventures of my life and one of the loves of my life. The funny thing was, it was as if we dealt with one fire at a time. There were moments when it was overwhelming – but we got each piece of new special need news on the heels of the previous need fading away. Certainly the joy and laughter Grace has brought to our family overwhelms the surprises her tiny body contains.

I don’t feel like we were bamboozled by our agency or by the CCCWA. I believe we knew enough to
say “yes” to her. I believe the information we had about her was true and accurate for what was known. Her severe cardiac needs screamed louder than the floppy trachea (tracheomalacia) and narrow esophagus. Scoliosis wasn’t really something that they flag in China in infants like they do here in the USA. It is what it is, it’s very manageable, and truly nothing is impossible with God, therefore I’m waiting and expecting healing and improvement as sure as I’m expecting the sun to rise in the morning. The scoliosis has already improved in the year and a half since we first met our daughter. The possibly tethered cord will show it self, I’m convinced, if it even is an issue. If I’ve learned anything in the three years since we decided to pursue adoption – it is that challenges will be met and overcome not a moment too soon or too late.  

Adoption is born out of loss. When Grace had lived a few days her birth parents must have realized there was something very wrong with her. She was found in a very public place, I believe, so that their sick little girl could have a chance at life. That same time, that same month, on the other side of the world our family began praying and taking our first steps toward adopting. I don’t believe it was a random coincidence, I believe God set it in our hearts to be her family. He knew she would be ours and that we would be hers; and if I believe that – then I must also believe that we are being shaped and equipped to care for her no matter what other needs surprise us in the years to come. We may have been surprised several times, and we maybe surprised again in the future. but I know God isn’t even once.


7 responses to “Surprise”

  1. Just beautiful. Thanks for sharing.

  2. Donna Dear says:

    Great post. I so agree. We were surprised by new info after getting home with our daughter. Her special need was not on our list, but we are so thankful she is with us. God is truly faithful and will see us thru it all.

  3. Leigh says:

    That is something I think is so frustrating.
    Her first parents could have abandoned her for a multitude of reasons, but the facts seem to say that she was abandoned because of her sickness, she needed help that the parents probably couldn’t provide. They loved her and selflessly wanted her to survive.

    While I believe adoption is a wonderful thing, I also believe that children are intended to be kept with their birth family. Had the family had the support to get their child medical help, they might have been able to raise her. This points to a fairly large problem.

  4. Ginger says:

    Haves your daughter been given the diagnosis of VACTERL Association? Your story sounds eerily like ours, except we’ve only been home from Eastern Europe for four months! Our three-year-old son had way more issues than we knew (right down to the tethered cord and heart defect), but we’re so thankful that he’s ours anyway.

    If you have questions about VACTERL, please don’t hesitate to contact me. We can compare symptoms like the weird-o adoptive moms that we are. 😉

  5. I’m glad your unexpected needs have been manageable and that you’re happy to have Grace in your family.

    Unfortunately, that’s not always the case. Sometimes the unexpected needs are totally overwhelming, and all the “expecting healing and improvement” in the world isn’t going to make things better.

  6. Dani says:

    Our experience was very similar as well. Except, unlike you, I do feel lied to as info was withheld by someone. In our case, like yours, it all “worked out” and I love my child very much, but I agree with Shecki. It doesn’t always work out and sometimes the unexpected needs are just too much.

  7. Renee says:

    We’re careful not to view SN adoption through rose-colored glasses, which is certainly the route to go for the most part, but at the same time – to say special needs are “just too much” is a pretty daunting thing to say when a child’s life is at stake. I’ve noticed the language in adoption has changed – we dare not to say we’re saviors, or that we’re saving a child — but let’s get real, many of these children would languish, at worst, die if they’re not adopted. Of course, we shouldn’t take on more than we can chew – but at the same time, that’s the reason why so many people don’t do anything outside their comfort zone — which in the end leads to 153 million orphans worldwide, and a myriad of other issues that are just “too much” for us.

    I suppose balance is key.

    My nephew is currently a Kenyan friend’s lifeline right now. In hospitals there, feeding and basic needs outside of direct medical care is left up to the family, and if your family isn’t around or not able to tend to you – you very well risk starving to death (among other things). When my nephew went to see him, he was skin and bone and suffering. My nephew fell to his knees and cried out – that is how severe it was. Because of an infectious disease, others would not go to see his Kenyan friend. My nephew? He couldn’t see himself telling his friend his needs were “too much.” My nephew is now risking a lot to see him and provide him with what he needs. A life is at stake. My nephew couldn’t just walk away. Praise God for those willing to heed the call.

    While we can’t go through adoption with rose-colored glasses, let us not forget what’s really at stake.

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