Understanding a Tethered Spinal Cord for baby

Finding Out

When Nora was born, the doctors found a dimple on her lower back, right above her little butthole. It was hours after her birth, I was barely awake. My parents arrived at the hospital to meet our beautiful baby for the very first time and Nate was pulled into the hallway.

I didn’t even notice them pull him out there, to be honest. If you have ever had a baby before, you understand this: I’m tired. Deep to the bone tired: but hey! I had just given birth to the most beautiful baby. All was right in the world! She was here! I had done it. My parents visited for an hour, and after they left Nate showed me a piece of paper that the doctors had given him. “Spinal Tether” and all sorts of medical lingo I could barely comprehend. 

Not soon after that, Nate’s parents arrived and we had another hour of visiting. I was shocked- what does it mean? Was she going to be okay? I had failed at making her. Too much chocolate cake cravings while I was pregnant. Maybe I didn’t drink enough calcium. I had missed that ONE day of my prenatal vitamins. On day one, I had failed at being a mother, I failed at making a healthy baby…

We kept it to ourselves for the first week until her first appointment with her pediatrician who was able to give us more information. She reached out to other doctors she knew, and had found the best place to send us. Nora’s pediatrician referred to the University of Michigan, Motts Children’s Hospital, to have a consult on her spine with a neonatal neurosurgeon. I had seen enough Grey’s Anatomy to know that was serious. There was something wrong with my baby. You don’t refer us- two simple everyday people- who had a one week old baby to the biggest children hospital in the state…. to see a specialist for her spine.

We had been home with this beautiful baby for a week. Our Nora ate- she was pooping, wiggling and was the most amazing thing I had ever looked at before. I couldn’t imagine there was anything seriously wrong with her. How could there be? She was perfect. 

Researching the SMART way

In that week we had been home, we had shared with my parents and close family about her dimple. I then did some research on the recommended medical sites, and learned more on what a spinal tether was. If I had just googled what the term meant… I would have fully regretted it.

I still don’t full understand completely- but basically it’s the most common and least life threatening form of SpineBifida. Very common- okay that sounds good, right? Least life threatening form? That sounds even better. IF there is something wrong with my baby- at least it isn’t THAT bad, right? 

We spent the next two months with this beautiful, happy, sweet baby. She grew and grew! Nora started to smile, she is lifting her head up, she is kicking and pushing with her legs. SHE IS STRONG. 

We had a consultation with the neurosurgeon, this kind man with a handlebar mustache; and he wanted to look at an MRI of her spine to know for sure. From just a physical exam he wasn’t exactly concerned- but still he wanted to know 100% for sure. 

And of course we wanted to know as well!!

Say Nora had this condition- it’s not life threatening. Some people grow up with it completely untreated and never have a problem. They don’t even know they have the condition. Others grow up with it, and it leads to back problems as an adult. 

 Nora’s father is 6 foot 6. He is a tall man! Nate has problems with his back everyday! Being that tall and living everyday life stooping or crouching, reaching down… leads to back problems. I myself am 5 foot 7. I will never be considered “short” when it comes to women, I am considered an above average lady when it comes to my height! This beautiful baby will never be short. We talked about it all and knew she would need the surgery to fix her condition. Not a difficult procedure, and not a life threatening one- but one that would help her quality of life later on as she grew! Of course we would have it done. 

We did not tell the “public” about her condition. I never posted on FB, I kept it close friends and family only. Why would we let everyone else freak about a condition, that we don’t even know she if she has it? I wanted to go back to work and be asked about my wonderful baby. Of course I didn’t want to go back and be asked about my “something wrong” baby. 

Nora’s MRI at 2 months old

I will never forget the day she had her MRI. We had been awake all night, as per our normal schedule on night shift as we usually go to bed around 4 or 5am. Her appointment was at 6am so we were both running on fumes. Giving Nora her last bottle by 2am, letting her sleep and trying to sleep ourselves was impossible. I had so many thoughts and fears. 

I have extreme anxiety, have always had anxiety, will always have anxiety. If I let myself sit and stew on something like this… I wouldn’t be able to function. I would be a mess! So, I didn’t let myself stew until that day. 

That day we had her all packed up, headed into the radiology department… we met a wonderful nurse who was a champ at dealing with my questions. We met four different anesthesiologists… and I literally felt like we were in a Grey’s episode.

All the scrub hats and monitors.

All the kind, soft voices explaining to us the possible outcomes of putting a two month old to sleep with anesthesia. She could have an allergy to the gas we don’t know about, she could have an extreme reaction. But they assured us that she was monitored for the entire test, the entire hour long scan they watched her breathing, heart rate, blood oxygen level and whatever else I didn’t understand that they talked about.

We asked if they had done this to a baby her size before, and he assured us that he had done this countless amounts of times to babies a third of her size. Preemie babies that were 1 or 2 pounds that needed surgery the day they were born… our 11 pound two month old is a walk in the park. But still. We had every right to be nervous. We were good parents to question and wonder about the possible outcomes. He told us that he would be doing the same thing if his baby was born with a possible tether.

He was the most kind and thoughtful doctor I had ever encountered and I can’t sing his praises enough… and I don’t even remember what his name was. I’m sure he introduced himself when he first came in… But we had so much going on in our heads and we were running on such little amount of sleep I regret not asking to know his name again. 

Thank you: kind, blue scrub hat, anesthesiologist, doctor guy.

I was given the opportunity to hold Nora one last time before she was wheeled back and… then we had to leave her in their hands. I can’t even begin to explain the pull of my heart as they wheeled my baby down a long hall on that huge crib/gurney. Not knowing if I would ever see her eyes open again… or smile at me again. That was the longest hour of my life so far. 

Nate was being a champ at holding himself together to help keep me together. He knew if he lost it I would be a disaster. He was reeling, feeling claustrophobic and in major need of fresh air so we went outside to sit and take in the breeze. We watched countless amounts of families arrive- kids in wheel chairs, kids with facial abnormalities. “Kids” who were adults being taken care of by their parents who were all getting older. There was a little boy without a nose. We saw a little girl missing her hands. We saw a teenager that had a breathing tube and had to walk with braces on her ankles and had braces on her wrists as she used crutches to walk into the building. I looked at all these beautiful children and their loving parents, and couldn’t imagine the pain and heart ache they have.

My baby’s “problem” isn’t visible. You have no idea if I hadn’t told you, or unless you changed a gnarly diaper and had to deal with a blow out. I can’t imagine the everyday life that these families live… and I can’t be more humbled or impressed by their love for their children! Parents who take such wonderful care of their children that have special needs are literal rockstars. There is no other way to put it. You rock, you are the best humans. You deserve all the good things.

Our results:

So this week on Tuesday, we had our consult with the Neurosurgeon to discuss the results of the MRI. We were able to stay in Ann Arbor, Monday night and head to the appointment by noon that next morning. After an extremely long wait, and an even longer wait in the exam room we were greeted by our doctor and given the best news we could have hoped for. Nora doesn’t have a spinal tether! The dimple is simply cosmetic and will not need surgery! If we feel that it is a cosmetic issue we could have it fixed, but it would not be necessary!

We were given instructions to keep her dimple clean and as dry as we can, being that its in her diaper and constantly in a dark damp area. Our biggest concern is keeping it clean, as so an infection doesn’t come into effect by the dark and damp area around her bottom. 

 She doesn’t need surgery, we never have to go back to that hospital (Lord Willing) and we can just enjoy watching her learn and grow!

I was overcome with such a relief to not have that constant thought in the back of my mind that I did something wrong- that I did something wrong during my pregnancy that caused this issue. 

We are both so thankful that we have a happy healthy baby that will not need surgery. There is nothing wrong that needs to be fixed! We get to enjoy our little one and watch her grow without having to worry about problems with her back, or anything alike. 

Nate and I are so thankful. 

We are so thankful to everyone who has been there for us in the past two months, all of the family that has sent love and support. All of the friends who have reached out to ask about Nora since we started to talk about her possible condition. We are thankful to our employers for giving us the available time off to get to her appointments without having to stress about covering the days when we worked. We are thankful to my wonderful cousin for house sitting for us while we took the day before her appointments to watch our house and pets. 

Knowing we have such a strong community around us that love us so much, and love Nora even more, is so wonderful. I couldn’t imagine going through the past two months without all of the outpouring love and support!