Fight for your babies, mamas and daddies…
Andrew’s life started with a full term pregnancy and a healthy baby born to a couple just about to celebrate 3 years of marriage. This story your about to read is long and includes a lot of details that might not seem significant to his scoliosis journey but I think it’s important to paint as clear a picture as possible of what life was like for us and hopefully encourage you when the road feels dark and overwhelming and give you hope that you can make it through this and that it is worth it.
At 10 days old, Andrew started “spitting up”. (more like a waterfall pouring out of his mouth) Seemingly everything that went in his tummy, was coming right back out. After talking with the advice nurse, we took him to the hospital within just an hour or so of onset. The amount of spit up combined with his tiny newborn size, he was already dehydrated on arrival. He wouldn’t hold anything down so an iv was needed. After the hospital tortured my tiny little 10 day old baby trying to get a needle in, they decided to transfer us to the children’s hospital. After admitting Andrew as inpatient, running a series of blood tests, stool and urine samples, getting an iv in for 4hours before it fell out of his scalp, he kept just enough in to gain a few ounces so they sent us home saying he must be fine. The vomiting continued and we were seen outpatient for imaging and weight checks as he struggled with dangerous weight loss. After everything was ruled out, he was finally diagnosed with reflux. Andrew’s reflux was so severe that he was diagnosed as failure to thrive and was in a constant battle to get anywhere near the growth chart.
At a feeding clinic for the reflux, they did a full exam and in addition to being low tone, I was told Andrew had torticollis. I was given all kinds of suggestions and exercises to do at home to strengthen his sternocleidomastoid muscle. Nothing worked. At 6 months old, Andrew was referred to physical therapy through Early Intervention. On our very first visit, the PT asked to strip Andrew down to diaper and look at his whole body. She looked at his spine and it was very clearly curved. She explained to me that scoliosis wasn’t a life threatening situation and some people live with it for a life time. She called the pediatrician and told him her findings and Andrew and I went into see him for an appt. Andrew was sitting on my lap in a diaper with his back to the door when the doctor walked in and he saw the curve with the naked eye immediately. We were both baffled. This giant curve seemed to appear overnight. We had been in clinic several times a week for months for reflux and growth problems and had never seen a curve. It’s hard to know now if it had been obvious much longer and we just missed it focusing on other issues or if it truly progressed as rapidly as it had seemed.
The pediatrician referred us to an orthopedic specialist at our local children’s hospital where they did xrays and confirmed the scoliosis. He measured Andrew’s film at 45 degrees and told me we would need an MRI to look for any congenital abnormalities that might not show on the xray. The ortho told me there was no rush. This wasn’t anything to worry about right now and sent us on our way. Leading up to this appt, I had googled unsuccessfully night after sleepless night trying to learn something about scoliosis in infants. At one point the ortho mentioned cast and that one word is what led me to www.abilityconnectioncolorado.org/newsite/infantilescoliosis and the Yahoo support group. That one word he casually threw out is what essentially changed our lives because it got me on the right path.
I didn’t hear anything about scheduling the MRI for a few weeks, so I called and finally got it scheduled, again with no urgency except for my own. The MRI results were sent to a neurosurgeon in the same children’s hospital as our ortho. The radiologist report said there was no evidence of tethered cord. Thankfully the neurosurgeon read the films himself because Andrew did indeed have tethered cord as well as syringomyelia. We had a follow up MRI to check for chiari malformation which was negative.
The ortho wanted to just monitor Andrew without any intervention. Wait and see. My baby was struggling to survive with severe reflux causing failure to thrive, delayed gross motor skills, a tethered spinal cord and now an aggressive scoliosis that was trying to crush his heart and lungs and the doctor wanted to wait. Scary. Scary as a first time mom. Scary as any mom. Scary. Period. I didn’t know much about casting yet but I asked him if he had heard about Mehta casting because of what I had read and heard from other families on the Yahoo support group. He said he had heard of it and knew a doctor in New York that could probably talk him through it over the phone. I never went back to that doctor again. I’m sure he’s a very qualified doctor for other pediatric orthopedic conditions but it was clear progressive infantile scoliosis was not one of them.
Andrew was unable to sit unassisted or bear weight on his legs at all at this point. His motor skills were getting further and further behind and his outlook looking more and more difficult. At 11 months old, Andrew had surgery to release the tethered cord. The surgery was smooth and aside from a site infection that cleared with a round of antibiotics, there were no complications.
After researching options and talking with families that were gracious enough to share their very personal stories, I knew where I wanted to go for treatment of Andrew’s progressive infantile scoliosis. I knew what I wanted for my son but I didn’t know how to get there. I knew I needed to travel out of state to get to the hospital I could trust to treat this very complex condition. I knew I couldn’t afford it. Shortly after Andrew was born, I quickly became a single mom despite all my picture perfect plans for our family. I was doing this alone and I didn’t have money and I was exhausted and scared and had no support system behind me.
There is a hospital local to us that does casting. They call it Mehta casting. They have the proper casting table. I knew in my heart though that they weren’t doing proper Mehta casting and I knew in my mommy gut that this wasn’t the right place for us to be. I applied for that hospital because I needed a plan. I knew I didn’t have to go there but if I couldn’t get to the out of state hospital, this was the best I could do. I felt sick about it, but I had to at least do something to start. Precious time is ticking. Early treatment in vital. These words kept repeating in my head day and night. We got accepted to this hospital and I felt zero relief. I was heart sick about it.
With our appt scheduled at the local casting hospital, I finally got the courage to apply to the out of state hospital. I didn’t know how I was going to get there. I didn’t have anything figured out but I knew that’s where we needed to be. That feeling never wavered in my heart. I knew.
While waiting for paperwork to process at the out of state hospital, we had a consult with the local casting hospital. You know those situations in life where you just know something isn’t right? I felt that. I felt it deep. The doctor did not have a bedside manner that gained my trust, he was shouting to a staff member in the hallway right in our sight. I felt awful there. When I asked questions, I was treated poorly and as if I shouldn’t be asking the doctor questions. I was the mom, he was the doctor. He was the boss and I wasn’t. My heart hurt. I was scared for my son and did not feel good about this connection or trusting my tiny little person in this doctor’s care. I set the casting appt there because I had to. I couldn’t travel out of state. I couldn’t afford it. I couldn’t do it alone. My husband was gone, I needed to work.
Then the letter came from the out of state hospital accepting my son. I was over the moon. I cried tears of joy and held my baby and assured him everything was going to be okay. We were going to make it. We were going to do it. I didn’t know how but it was happening. It. Was. Happening.
The care coordinator at the out of state hospital and I had a long phone conversation discussing what was next and what to expect and she answered all my questions. I just needed to wait for a call back with a casting date and we were set.
Then she called back. She told me the doctor at the out of state hospital reviewed our case and determined our local casting hospital could handle it. I was devastated. I hung up the phone and cried my eyes out. Heart broken and scared. Again. I was in the car when I got the call and as soon as I got back home, I went straight to the yahoo group and shared what was happening. We were being stopped from going to the hospital I trusted by logistical red tape. At this point, the families on the support group were my life line. They knew. They understood.
A family on the Yahoo group who are patients at the hospital I was trying to get Andrew to heard my cry for help. They talked to the care coordinator at their next visit and explained our story and my heart for my son to be treated there. The family came back and told me they found out I could fly down to the out of state hospital for a clinic visit to meet the doctor and let him see my son in real life rather than his medical file and see if he would reconsider Andrew as a patient.
Time is ticking. Early treatment is vital. The words continued to echo.
I went ahead and kept the casting appt at our local hospital hoping that any cast would be better than no cast. We got Andrew’s first cast locally and I was so sad. The cast didn’t have plaster of paris, it didn’t have a cut out in the back for rotation, it wasn’t perched on his hips which caused it to shift around on his tiny body. I couldn’t wait for our out of state clinic visit to meet the doctor I wanted and to show him the type of cast that was available to us locally.
2 weeks after Andrew got his local cast, we were on a plane to the out of state hospital. We had a clinic visit, I shared my concerns with the doctor, he did a thorough exam of Andrew, re-measured his spine which was actually 60-65 degrees with rotation, and we left that day officially accepted as patients to the hospital I trusted and knew without a doubt was doing proper Mehta casting and had a high case load with a lot of expertise for cases just like Andrew’s. We still had a very long road ahead of us but for the first time, I felt some peace that everything just might be okay.
We flew back a month later for a casting date. Andrew woke up from anesthesia but his oxygen saturation was low. He was very worked up in recovery, so they let him come back to his inpatient room still on oxygen so he could be with mom and hopefully calm. In addition to low O2 sats, he wasn’t acting like himself. He wasn’t recovering from anesthesia like he always has at home. He started becoming weak and unresponsive. The room filled quickly with doctor, PA, anesthesiologist, nurse, charge nurse….it was suddenly all hands on deck. They took Andrew from my arms and put him on the hospital crib. Checking his cast, his vitals, everyone talking collectively and no room for mom to be near anymore. I was terrified. He was given narcan to reverse all the meds he had on board and that brought him back to baseline with the exception of oxygen. He wasn’t able to breathe room air but was responsive again and it looked like we were out of the danger zone. After much review and discussion, it was determined Andrew was not acclimating to the change in altitude from our home state to the hospital. I was heart sick. I have just fought against so many challenges to get him here and here makes him sick.
We came home and saw a pulmonologist. He diagnosed Andrew with restrictive lung disease and agreed Andrew could safely fly and be at elevation….with oxygen. A baby on oxygen just to get to an out of state hospital to get a cast that some people tell me we can get done locally? My heart knows otherwise. We powered through. I started the fight to get oxygen equipment. Insurance was refusing it and now I’ve got travel expenses and portable oxygen rental. There is no way I could afford all of this. I was told that some local shrine’s help with travel expenses but because we had a local hospital we could go to, that there is no way they would cover our expenses to get to a different one.
I tried anyway.
They accepted us. No questions asked.
I got approval to pay for our travel to the out of state hospital without an ounce of hesitation from a group of kind hearted generous men who had never even met us before.
So, 6 weeks after our first out of state cast, we were ready for the next cast trip with oxygen in tow. Let me just brag on my son for a minute. That kid is amazing. He played and laughed and giggled and could care less that he needed a canula in his nose to breathe. Kids are strong resilient little people and my son was no exception. Never ever doubt your kiddos or let your fears control their outcome. They got it handled. Totally.
After months of advocating and fighting like crazy, insurance approved the oxygen. When it comes to your kiddo’s health, fight. When you feel like giving up, fight. When it feels like you’re totally defeated. Fight more.
We travelled for a series of 8 casts, 2 full time braces and 2 night time braces. There were times of celebration and times of defeat. When we got to our 6th cast, things started to feel a little dark. We weren’t making progress and my dreams of a cure seemed farther and farther away. Guess what? Good doctors don’t quit! The PA gave me a pep talk and told me we’re going to keep going. We’ll keep going as long as we have to. We’re not giving up. The very next cast, Andrew’s spine was completely straight in cast. We went from fear to victory in ONE CAST!
We casted for 14 months, we braced full time for a year, we did night time bracing for 6 months…..Andrew looks phenomenal. His neck straightened, he learned to walk, he learned to run and his spine is completely straight. 2 ½ years ago doctors told me he would need spinal fusion in a year. 2 ½ years ago doctors said his outlook was poor. 2 ½ years ago, I am the only one that believed in a miracle. Today, we have it. Today, we are celebrating a straight spine in my son’s body. We gave up baths and sand and beach days for a while but the rest of my son’s life is saved. Absolutely none of what we had to miss matters now, not one single thing.
Metha casting works. Early treatment can be a cure. Fight for your babies mamas and daddies. It’s worth it.
