Our greatest challenge yet...
When my daughter was born on a beautiful day in November, my husband and I were the happiest people in the world! We had a healthy and gorgeous baby girl who happened to have a harmless birthmark on her arm and parts of her back and chest that the doctor confirmed was harmless so we never thought twice about it.
At just under 3 months of age, Farrah became very sick and spiked a fever that required a trip to the emergency room. We imagined it wasn't a big deal and figured they would prescribe us some Tylenol to lower the fever and send us on our way... You can imagine our surprise when they admitted us and told us we would be in there for a week or more. As it turned out she was sick with not only a common childhood illness known as RSV, but she was also battling a urinary tract infection. We found out later that she was suffering from a condition called vesticoureteal urinary reflux. In simple terms, her bladder was refluxing her urine back into her kidneys and causing infections. We were told it was something she would grow out of but would need preventative antibiotics every day for the first two years of her life and then we would have to run tests to see if she outgrew it or if she would need to have surgery to correct the problem. To our delight, she outgrew it by the time she was two and we were able to take her off of antibiotics!
At around 18 months of age, I noticed that as she would be running around playing, Farrah's ankle would give out on her and cause her to fall. It concerned me but when I asked people around me, I was assured that it was a first mothers paranoia and that I needed to relax because it was perfectly normal for toddlers who are still perfecting the art of walking. I made a mental note and decided to file it away in my mind and not worry about it. A couple of weeks later, she was running around playing when I noticed her ankle give out, but this time, when she tried to get up, it was as if her legs were numb and she wasn't able to put herself back in a standing position. I immediately called my mom who rushed over to my house, but by the time she got here Farrah had regained feeling in her legs and was up and running again. I decided to call her pediatrician and went to see him that day. He said it could be normal, but wanted to get an MRI of her back and x-ray's of her legs to make sure everything was forming as it should be. His fear was that her birthmark was pressing up against her spine. It was at this point that the doctor explained that her birthmark was known as a hemangioma. Its basically a benign tumor that is formed from extra blood vessels developing in her arm. We could see vessels on the surface but inside of her arm, the hemangioma could grow deeper than what we could see. The MRI would show us any pressure on her spine caused by the hemangioma.
We took her for the x-rays and were told that her legs were forming perfectly well. So we went off to the MRI room. They had to put her under anesthesia so she would be still through the tests, but we were told the tests would only take an hour and a half. What should have been only and hour and a half ended up taking 3 hours. After a few days of waiting we were able to see the pediatrician and get the results. Her doctor explained that Farrah has a tiny little cyst in her spinal cord.We were assured that it was completely normal and most people live their whole life without even knowing they have it. Her ankle was probably giving out because the cyst was pressing against a nerve and she would grow out of it in no time. It was suggested that we take her back for an MRI every 6 months for a few years to monitor it. I was referred to a neurologist who agreed with the pediatrician and wanted us to monitor just as a precaution.
I spoke to Peter about it and we both decided since it was so minor, we didn't want to have to put her under anesthesia so many times and unless she had new symptoms we would leave it alone. Her pediatrician and neurologist made it clear that it was common and fairly harmless so why worry, right? WRONG! Although her leg stopped giving out on her by the time she turned 2, at around 2 1/2 years old, Farrah had been complaining of back pain about 1-2 times a month. It had been about a year since her last MRI so I noted the pain and brought it up at her 3 year check up. The PA at our pediatrician's office was immediately concerned. She questioned why we hadn't been keeping up with her 6 month MRI's and I told her we didn't feel it was a big deal. I explained how minor it had been explained. The PA made it clear that although she didn't want to alarm us, we needed to get another MRI as soon as possible. She explained to me that it may be growing and as it grows it can be causing nerve damage that may not be repairable. She even went as far as to say that she could just wake up one day and not be able to move a part of her body and never be able to get the movement back. The fact that she was having back pain was a major indicator that the cyst was growing. I made an appointment with her neurologist and started asking questions. I didn't understand why they made it seem so normal and safe to have the cyst. I never even thought twice or asked any questions before this point because of how calm and relaxed they acted about it. For the first time when I spoke to the neurologist I was given a name to her problem. She has a condition called syringomyelia. Her cyst goes from just below her shoulder blades to right above her belly button. I was infuriated. I was told it was tiny. When I questioned why it was explained this way, he told me it was because the cyst is very thin. Its only 2 millimeters thick and the thickness is what is concerning. Needless to say we had an MRI done right away.
Since they knew what to look for it went by much more quickly. She was only gone for about an hour and a half and the radiologist came in right away to give us the results. Her cyst had grown from 2 millimeters to 2.5 at the thickest point. Although it is a small amount of growth, given the amount of time and the simple fact that it was growing pointed to her most likely needing surgery on her spinal cord. She would need to avoid any contact sports and not play with anything that could cause her to fall and hurt her spine. This meant no roller skates, bikes, gymnastics, trampolines and so on...
Her neurologist advised us that he could do no more for her case and she would need to see a neurosurgeon. He also suggested that we see a genetics specialist as well as a dermatologist to see if there is any correlation between her hemangioma, the syringomyelia and her previous urinary tract issues. We had to see the neurosurgeon in El Paso in order for insurance to cover the appointment, but we would need to go to Austin to visit a Genetics Specialist and a Dermatologist.
The neurosurgeon at the local children's hospital went against everything the neurologist, pediatrician, PA, radiologist and nurses we had spoken to had said. He said the growth meant nothing and she was fine. We wouldn't need to monitor her and she could continue with any sports or activities she wished. This left us relieved but very bothered. Why would he go against everything we had been told by so many different people? But at the same time, this is his specialty, he would know more than they would, right?? We addressed our concerns with Farrah's pediatrician and they agreed that we would definitely need another opinion. Since the last MRI we have seen the Dermatologist as well as the genetics specialist and received no answers. Perhaps the most concerning aspect is that the complaints of back pain have increased exponentially since her last MRI. We go through phases where she complains almost every day and on Christmas Eve she took time out of playing with her cousins so she could lay down because she said her back was hurting. We have scheduled another MRI to check for further growth. As per the genetics specialist and dermatologist we will also need to check the birthmark to see how deep it goes underneath the skin. Since it is on her left side and is an issue with her veins, they fear it could affect her heart or her blood flow or vessels and valves. She has had an ECHO and an EKG and both have come out normal. Her next MRI will last for about 4 hours and from there we will take the results to the new neurosurgeon that we have been referred to at the Texas Children's Hospital in Houston. As you can imagine, we are eagerly awaiting our appointment.