It was December 2010, exactly one year since we had brought home our first child from China. I happened to be on New Day Foster Home’s site, and this face popped up on the screen. His eyes captured my heart. Immediately, all of our children and I began praying for this little guy, wondering if some day, the Lord might make him a part of our family. We took his photo to Daddy who promptly asked us if we were crazy. However, it wasn’t long before this photo and the Lord captured Daddy’s heart, and we began pursuing his file.
I knew that his needs were listed as spina bifida and mega colon, but ignorance was bliss. I loved this little guy, and we were going to work to get him home. A couple of months after beginning to pursue the little one soon to become our “CJ”, a new arrival landed at New Day Beijing – Landon. I kept being drawn to his picture, and since our kids think “the more the merrier”, they were thrilled with the possibility of bringing home 2 brothers! Landon also was diagnosed with spina bifida, scoliosis, and clubbed foot.
My husband and I spent 4th of July weekend fasting and praying about pursuing Landon also, and after that weekend, we felt like the Lord had made it clear that Landon was to be our son also.
The Lord moved mountains to bring home these boys, and He encouraged us along the way with many things to solidify in our hearts that this was His plan for us. It was a good thing, too, because when we got home, things were more than we had bargained for.
I had done some research on spina bifida, but nothing really prepared me for life after we arrived home. It wasn’t bad; it was just more than we anticipated. The first thing we did was to take the boys to a spina bifida clinic at our local Children’s hospital. They were amazing and a wealth of information and support services! The boys went in for their MRI’s together, and I just pranced in for the results, sure that everything was going to be fine.
I remember clearly the neurosurgeon looking at me asking if a nurse could watch the kids so that he could speak to me privately in his office. We walked in, and he says, “I have a bit of news that may seem overwhelming. Both of your boys’ spinal cords appear to be tethered. Both of them will need neurosurgery very soon. We can do them back-to-back so that they can recover together. They will need to lay flat for a week, and you will need to watch for spinal fluid leaks for a few weeks post surgery until the wound heals. We will also have follow-up visits monthly for the six months post surgery to ensure proper healing.” I just responded, “Well, okay, if this is what they need, schedule it, we will be fine.” Again, ignorance was bliss.
Both boys had de-tethering surgery within 2 days of each other. It was amazing because we saw both ends of the spectrum. CJ’s was textbook – 4 hours, no problems. Landon’s surgery was very complicated and took 10 hours. During Landon’s surgery, we were a wreck waiting for our surgeon to walk out of the OR. When we finally saw him, I about knocked him off his feet. He said that they had been able to de-tether him, but there were times that he felt like they weren’t going to be able to accomplish the de-tether. It was probably the countless people praying for Landon and the team working on him.
Their recoveries were different, too. CJ’s incision took weeks to heal – we had to leave it open and keep it very clean, but he was fine. Landon ended up having headaches, fevers, and passing out a few weeks post surgery, so we had to be admitted. His recovery was a long, hard road, but in the end, he was fine!
The de-tethering saved their lower extremity function and prevented further damage from being done! There is so, so much that I could write about tethered cord. Because we had 2 boys with both ends of the spectrum, I learned a ton.
However, the biggest lesson that I learned is that HE is faithful!! He will equip you to what He has called you to do. I would love to say “tethered cord is an extremely do-able special need”, but you know what?? Truly, any special need is do-able with the Lord.
If you are considering a child with tethered cord or if you just want to talk about tethered cord, I would love to chat with any of you! If He is leading you to a particular kiddo, go for it. You will be blessed beyond imagination, stretched beyond what you thought possible, and you will love Jesus more each day.
Currently, one of our guys is being evaluated for a possible re-tether (which means that the cord is tethered again). It makes me sad, and at first it overwhelmed me. But then I remembered how faithful the Lord was to carry us through the last de-tethering surgery, and I know that He will carry us through this, too.
~ Guest post by Nikki, a Tethered Cord Mentor Mom
Waiting Children with Spina Bifida or Tethered Cord
This handsome baby is Luke and came into care shortly after birth. He had surgery for spina bifida in August 2013. He also has bilateral clubfoot. A report from May 2014 states that he can sit unsupported and roll over. He is an expressive little guy who lets his caretakers know when something displeases him. But no matter how upset he is, he stops crying and begins to smile when someone comes to hold him. He is currently listed with Holt, please contact them for more information.
Jacob has tethered spinal cord and counterclockwise rotation of the heart. He came into care when he was two months old. He can sit unsupported, although he leans forward a little bit when he sits. His muscle strength is a little low. He does not yet speak meaningful words. Jacob likes communicating with adults and playing with lots of people around. He laughs out loud when he is happy and is a very active child. He is attached to his caregiver and gets along well with others. He is also listed with Holt, please contact them for more information or to review his file.
Sweet Julian will be two years old in November. He was born with a tethered spinal cord and several related issues, which were surgically corrected when he was only four months old. Julian has been living with a foster family for the past 18 months and is doing quite well. He is attached to his foster grandmother and loves to be cuddled and held by her. He says some basic words, knows his body parts, is walking independently and is thought to have normal intelligence. He has good bowel and bladder control. Julian is described as outgoing and sweet-tempered. He likes listening to music and playing with toys. Could Julian be the son you’ve been searching for? He is listed with Cradle of Hope, please contact them to learn more about Julian.
For more information on beginning the adoption journey, contact the Advocacy Team.
Thank you for this encouragement. We are adopting a child with post-operative tethered cord. The unknowns are difficult. Thanks for the reminder that God will bring us through whatever the future holds. So true!
We are considering a boy with SB and tethered chord. I would love to hear more about tethered chord! Would you be willing to talk to me?