Our Journey to Spina Bifida

April 1, 2018 adopting again, April 2018 Feature - CNS, Central Nervous System, Family Stories, hip dysplasia, hydrocephalus, leg length discrepancy, older child adoption, reluctant husband, spina bifida 3 Comments

Our journey to spina bifida started with a book — Knowing God by J.I. Packer. I was reading the book for an online book/Bible study. It was a meaty book, and I struggled to get through many parts of it.

But then I read these words:

“Nor is it the spirit of those Christians – alas, they are many – whose ambition in life seems limited to building a nice middle-class Christian home, and making nice middle-class Christian friends, and bringing up their children in nice middle-class Christian ways, and who leave the sub-middle-class sections of the community, Christian and non-Christian, to get on by themselves. The Christmas spirit does not shine out in the Christian snob. For the Christmas spirit is the spirit of those who, like their Master, live their whole lives on the principle of making themselves poor – spending and being spent – to enrich their fellow men, giving time, trouble, care and concern to do good to others – and not just their own friends – in whatever way there seems need.”

Wow. That hit me right in the middle of the eyes. We had already adopted twice. We had the “all-American” family. But I knew then and there that God wasn’t finished with our adoption journey quite yet.

I soon started exploring waiting child lists, and one day I saw her. Her picture literally took my breath away, and I knew she was ours without knowing anything about her. Turns out she was born with spina bifida, and she had a “unclear” MRI. My husband was not as enthusiastic about pursuing her as I was. But the Lord kept taking me back to those words of Packer’s which echoed one of my favorite Bible verses of all time: Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world (James 1:27).

We sent her file to a doctor to review, and what she had to say wasn’t as scary as we had feared. We also talked with a family who had had her file reviewed by another doctor but decided not to pursue her. There were still many unknowns, but we decided to jump in and add this 7-year-old sweetheart to our family. We are SO GLAD that we did!

Fast forward 4 years, and here’s where we stand health-wise with our Gia P: her SB lesion was very high up her spine… almost to her skull. As a result of this, she has hydrocephalus and chiari malformation. Her hydro was untreated in China. Once home, her neurosurgeon first kept an eye on it, as it seemed to be very slow developing.

Then we noticed issues with her eyes, which is a common symptom of hydrocephalus. One eye started to wander. It was determined that her hydro was starting to put pressure on the optic center of her brain which in turn was causing her eye to wander. We decided to put in a shunt. So at age 10, Gia received a VP shunt. The surgery was easy and her recovery was fast. Her eye did not correct itself, though, so she required a further surgery to correct her eye muscles.

She is currently doing very well on both fronts. She suffers some balance issues as well as weakness, mostly on one side of her body. She receives PT through our school district. She struggles in some areas at school, but it’s honestly not clear yet if that is SB-related or due to the fact that she started school at age 8 and is still playing catch up. She is extremely high functioning: she has played basketball and she loves the trampoline and jump roping. She is the most caring individual I have ever met. She loves to draw, and she loves animals.

The Lord was not quite finished with us at this point. He led us to one more SB sweetie in China. This little girl, Gladys, was the same age at adoption as Gia was — 7. We figured, “We’ve got this, right?” I think God laughed a little at that.

This little girl had a much different story than Gia. Whereas Gia was left at the orphanage gates as a newborn, from what we can glean from Gladdie’s file, she did not enter the orphanage until age 2. She came to them with a surgery scar in the thoracic region of her spine. Did her birth family provide her surgery? They may have, since there is no record of any surgery in her SWI file. She was almost immediately transferred to a foster family.

As soon as she started to walk, it was evident that there was some sort of lower limb difference. By the time we found her file and watched videos, this difference was very evident. Her left leg was shorter than her right. However, she was very mobile and self-sufficient, and from what we could gather, she was continent. (This latter fact stunned our neurosurgeon, based on the location of her lesion/scar.)

We decided once again to jump into this adoption with both feet.

Two years home, here’s where we stand healthwise with our Gladys: her first consultation once home was at Shriner’s Hospital. After an initial consultation and gait study, it was determined that her left leg was 1.25 inches shorter than her right, one hip was dislocated, and both hips showed signs of dysplasia. She was also determined to have suffered nerve damage to her left leg — one entire nerve root was “dead” — because of the location of her SB lesion. She was fitted with an AFO to help support her left leg and force it to bend, which it cannot do on its own when she walks.

In June 2017, Gladys underwent bilateral pelvic osteotomies. Recovery was loooong — 6 weeks in a spica cast (!) — but fruitful. She still walks with a pronounced limp, but both hips are firmly in their sockets, and her hip joints have been built up and should not require further surgery, at least not for a long time.

According to the neurosurgeon, her spine is technically tethered. But it’s “normal” for her. And unless or until she experiences stretching of her spinal cord due to growth, we are on a wait and see plan. She falls a lot due to her leg length difference. She uses a walker when lots of walking is required. She holds hands with kids at school when walking from one part of the building to another. She wears knee pads every day to help save her poor knees from scrapes and cuts due to falls. She is the most affectionate of our four girls, and she loves to dance despite her disability.

Spina bifida is one of those congenital conditions that presents differently in each and every person, even if lesions are in the same location on the spine. We have learned with both of our girls with SB to expect the unexpected.

There may be issues that crop up in the future. With Gia, will her cognition be impaired due to SB/hydro? With Gladys, will her left leg fall more and more behind in growth compared to her right leg?

We just don’t have answers right now.

But we can confidently say, along with Timothy, “I know whom I have believed, and am convinced that he is able to guard what I have entrusted to him until that day.” We know that our girls are in His hands, that no medical or health situation will be a surprise to him, and that we are the lucky ones to have these precious girls in our lives.

– guest post by Amy: email || blog

3 responses to “Our Journey to Spina Bifida”

  1. Tish says:

    Beautiful, amy!

  2. Kelley says:

    What a gorgeous family you have! Praising God for your faithfulness, and asking Him to bless you abundantly. ❤

  3. Kim Latham says:

    We have three bio kids and two from China with sb. Both had lesions between their shoulder blades. Our daughters is more complicated than our sons. She just had a detethering surgery. Her cord was being pulled and she was experiencing many symptoms. Today both are fine. MRIs every few years as they grow. Loved reading about your girls! Sb is scary to so many.

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