*(Note: All of the photos, accept for the x-ray, are from the second spine surgeon back in 2010. The photos from the first spine surgery were too painful to see and have been deleted from the family computer).
I remembered when I was 8 years old when I was first diagnosed with scoliosis. Scoliosis is pretty common in most Little People, but at the time, I wasn’t aware how severe my scoliosis would be. The curve in my spine was pretty small at the time, around 20-30 degrees, but to prevent having surgery to straighten it, my parents decided to get me fitted for a back brace that would hopefully correct the spine on its own.
We kept trying several back braces, even traveled to LA to get fitted for one, but nothing would work. Because of my type of dwarfism, my ligaments and joints are extremely lax, so my spine needed a lot of extra pressure in order to straighten it. They were able to straighten it, but because it required a lot of pressure, I could not breathe nor walk. I
remember this one guy from LA – we called him “The Lerminator” – who did not care if I could breathe or walk. My mom was furious at him, and kept saying to him, “Take that off right now! She can’t breathe!” And his reply was merely one of someone who lacks empathy in the matter and only wants to do his job; he replied, “But…it’s straight.”
I was around 9 years old at the time, and after that, we decided that it wasn’t worth getting fitted for another brace if it meant discomfort for me. I was at 70 degrees and had been at 70 degrees for a while. So we were hoping that the spine would stop progressing and remain at 70 degrees. I was managing ok.
In 2007, I was 11 years old and it was time for my routinely check-up with my spine surgeon at Boston Children’s (yes, because the best surgeons for my case are not in Houston, we’ve had to travel a lot). I remembered, it was in March and pretty cold. When the surgeon came in and looked at the x-ray, it was obvious the spine had progressed significantly…I just didn’t know how much until the surgeon said, “It is now at 100 degrees. You will be needing spine surgery sometime this year.” Those dreaded words that we have been avoiding…”spine surgery.” From the x-rays, the spine had progressed so much to the point that it was compressing on my stomach and compressing my rib cage – which explained why I was having trouble keeping food down and having sharp pains in my back to the point it hurt to breathe.
I remember I lost it in the room and cried as the surgeon started explaining the “latest surgery option” they offer in the states. I was still young and wanted to gain as much height as possible as I was only 2 ft 9 inches tall at the time, and there was only one option in the states at the time that had a rod that would allow me to continue to grow. It was two rods that would attach to the rib cage, known as veptor rods. The problem was they restrict your range of motion and there is a 75% probability they will break the ribs. Not only that, the only way for my
spine to continue growing was if I went into the OR every 3-6 months and have the surgeons surgically expand the rod.
I just wanted to give up at that point, but that was not an option for my mom. If I didn’t have any form of surgery, the spine would continue to progress and compress on my longs, and then my heart…
My mom didn’t want to take this chance, but she knew there must be something better out here for me. Because my mom is the best advocate and the best researcher out there, she found another option. There as a new rod that was developed in Paris, France, by a guy named Arnaud Souberain called The Phoenix M Rod. What made this rod special was that it attached only to one side of the spine, so it was less invasive and more secure than the veptor rod. Also, the way this rod allowed me to continue growing was by turning a magnet back and forth outside of my back, and the chamber at the bottom of the rod would feel the magnetic force and would slowly expand the rod.
The only risk was that it was a new upcoming rod and only 30 people in the world had the surgery, none from the US. Despite the risk, It was decided then that the best option was to fly to Paris and take that chance.
We scheduled the surgery to be on July 12th, 2007 which was one week before my 12th birthday. Of course arriving to Paris, France, we tried to do as much sightseeing as possible to keep our minds off of the surgery.
But of course, the inevitable came.
July 11th, the day before the surgery, and I had to sleep in the hospital the evening before – very different from the US. I had to take an iodine bath to prevent any infection. At the time, I had no idea what to expect. Neither did my parents. The only thing we knew was that it was
supposed to take about 4 hours.
The day of surgery, we’re waiting. I get called in. My dad comes in the OR with me since he is an anasthesiologist. I remembered being worried, scared, uncertain. My last words to my dad before I were, “Promise me everything is going to be ok.” And my dad did. And then I went to sleep…
One thing I remembered clearly was that I woke up during the surgery. The first thing I saw was white (probably because I was faced down on the table), and I heard the anesthesiologist tell me in a gruff, French accent, “Carolina. Move your legs.” (note Carolina is my actual real name, Cuquis is a nickname).
His command registered in my brain. I tried to move my legs but they felt stuck like glue. His voice got louder, gruffer, and more urgent. “Carolina! MOVE YOUR LEGS!”
And I kept trying and trying but they were stuck. I was getting upset and frustrated, but then they put me back to sleep.
When I finally woke up from surgery, I had no sense of time. In terms of my body, all I could move were my toes. At the time, I figured that was normal…until I was taken to the ICU. Once I got there, I finally learned the whole story:
- The surgery had taken 9 hours instead of 4 hours.
- The nurses did not communicate with my parents about why it was taking so long. In fact, they had told them to go sightseeing because Paris is such a beautiful city.
- My mom throw a fit when she didn’t get any information and demanded information.
And then finally, the main thing that happened during the surgery that caused this ruckus…
4. The surgeon was able to completely straighten the spine…but as a result he overstretched the spinal cord. This caused me to lose feeling from the waist down. In other words, they had made me paraplegic.
Luckily, they were able to get the feeling back in surgery by decompressing the spine, meaning I still have a small curve in my spine. However, I had no strength in my arms, and legs. I had to relearn how to walk completely.
The next year was a difficult one for me, starting from once I got out of surgery. My mom had to constantly fight in French with the surgeons and doctors about my care. She had to fight to sleep next to me in the ICU, she had to fight them on the type of brace they gave me to protect my back (which was heavy and fitted before the surgery so it would hit me in all of the wrong places, causing bruising and pain).
While in the hospital, I learned some French. I understood when they would ask me if I was tired, je suis fatigue? And the only phrase I knew in French was: Je parle français comme une petite fille française, I speak French like a little french girl.
I was in the hospital on my birthday, but the best present was that I got to go back to the apartment on my birthday.
But I remembered that I was in a lot of pain and was so weak that walking would be very difficult for me. The hospital did not provide any physical therapy at home, so it was up to my mom to help motivate to walk. There would be times where I was frustrated and in pain I would not even want to try. Luckily, we were saved by a very sweet Spanish therapist at the hospital named Juan who agreed to come to the apartment and help me walk for no pay (although we did pay him in Cuban food).
Once we got home, that’s when the real test was put into play. My dad left for a fellowship in Washington State so it was just my mom with me to get me back on my feet again. We would have our moments of screaming, fighting, crying because we were both desperate and tired. Ironically, the easiest thing out of all of this was the lengthening of the spine itself because it was just with a magnetic and noninvasive.
My mom never gave up on me. There was no way she would let me. She decided to use dance and music as a way to motivate me to walk again. I have always grown up salsa dancing with my family, and it always made me feel alive, so not being able to dance was a struggle for me. I remembered she put on the song “Historia de un Amor,” from the movie Mad Hot Ballroom, and we would do the basic rumba box step together. It made me feel good because it felt I was actually making progress. The rhythm of the music also helped me focus too on where I needed to step.
We also found a better back brace that would help protect my back in case I accidentally fell. I was amazed we found something that allowed me to breathe.
I wasn’t able to go to school that year, so I had a teacher from the district come to the house three days a week to give me the lessons. She was a lifesaver as it was nice to talk to someone and have outside contact.
Slowly, I was able to start walking on my own with my back brace. By the end of the school year, I was able to start dancing again. I realized through all of this that dancing was my main motivator to want to get up everyday and move. That and the fact that I had my mom by the side and not give up on me.
In the end, I ended up losing the back brace in 9th grade, but in 10th grade, 2010, three years after my first spine surgery, I needed to go back to France to get my rod replaced as the current rod was becoming disconnected.
What also helped was knowing that I had my high school supporting me and wishing me well on my surgery. My high school class was only 50 people, and my principal and teachers arranged a going away party for me. Knowing that my friends would be waiting for me when I got back made me motivated to get better faster and knowing
Luckily, this surgery went significantly better. It was only four hours and I had no complications. I was sitting up day three after surgery and was walking the following day. When I went to see my surgeon for the one week follow-up, he said that I had “conquered the scoliosis.” The surgery was a “victoire,” a victory.
A big takeaway was that life is very short. You can lose the ability to walk in an instance, and realizing that I may not be able to dance again makes me want to live life to the fullest.
I know at some point I will have my spine fuse as that is the course of life and the fact that my spine is unpredictable. But I have stopped growing, my rod is stable, and I’ll worry and deal with it when the time comes.
Right now…I’m going to live my life.
R.I.P – Arnaud Souberain
In 2012, the engineer who created my spine rod sadly passed away in an airplane accident. He loved adventure, including flying airplanes (as the pilot) and dancing, such as “acrobatic rock-in roll.” He was an odd, quirky guy, but he was a genius. He had a big heart and loved seeing how his inventions could help children with orthopedic issues. The original thought behind the Phoneix M Rod was to help patients with bone cancer who still had more room to grow; the rod replaced the bone, but the magnetic force allowed the opportunity for the bones to continue to grow.
I remembered he was excited that I was the first American patient to receive one of his rods. He never revealed the secret for his rod, which was a shame because there were a lot of children with scoliosis that could have prevented undergoing multiple surgeries to lengthening the spine. Now though, similar versions of his rod are being created in the United States.
However, even though the surgeries were physically and emotionally painful, I am thankful I did it when I did it and thankful that we found Souberain at that time. He saved my life, and saved my life from more suffering and surgeries.
And for that, I am thankful.
Souberain, si vous êtes à l’écoute, s’il vous plaît savoir que je suis reconnaissant pour vous être un génie et la création de cette tige. En raison de la chirurgie, je suis capable de respirer sans douleur, manger sans la colonne vertébrale comprimant mon estomac, et marcher et se tenir debout avec une bonne posture. Tu m’as rendu plus droit, et tu m’as donné un nouveau corps; Un corps qui se sent belle, et que je peux penser à moi-même, “je me sens jolie.”
Nous avons pris ce saut de foi en vous, et même si nous serions frustrés avec vous lorsque la chirurgie n’est pas aller selon le plan, à la fin, il s’est avéré que pour le mieux si cela signifie de ne pas avoir à souffrir par beaucoup plus de chirurgies.
Merci donc de m’avoir sauvé la vie. Je ne serais pas ici si ce n’était pas pour vous.
Souberain, if you are listening, please know that I am thankful for you being a genius and creating this rod. Because of the surgery, I am able to breathe without pain, eat without the spine compressing my stomach, and walk and stand with good posture. You made me straighter, and you gave me a new body; a body that feels beautiful, and that I can think to myself, “I feel pretty.”
We took that leap of faith in you, and even though we would get frustrated with you when the surgery did not go according to plan, in the end, it turned out for the better if it means not having to suffer through many more surgeries.
So thank you for saving my life. I wouldn’t be here if it weren’t for you.