Support Baby Ellee

Believe it or not this entire ordeal started with a tiny skin tag on Ellee’s cute little tush. On the day she was born the nurse noticed it and told us to mention it to our pediatrician on her two day visit and that they would just snip it off. No one thought a thing about it as we had a seamless pregnancy and birth and Ellee was perfect in every way! At our pediatrician appointment we mentioned the skin tag and our doctor looked at it and became concerned. She said often times dimples or skin tags can be a sign of spinal issues. She had a meeting with the other pediatricians and they decided that she most likely had a tethered spinal cord. (For those of you that may not know, in a normal person, your spinal cord dangles in your spinal canal and as you grow it grows with you. For some reason, Ellee’s spinal cord is attached to the bottom of her spinal canal, so as she grows it is actually stretching like a rubber band and and pulling on a bunch of very sensitive nerves.) Cory and I were horrified! As a brand new mom I was already so emotional I could hardly keep my head up right. I started googling, reading and researching, of course, and was so scared for our little girl! If not treated by surgery there could be issues like not being able to control or feel when you have to go to the bathroom, leg numbness so you can’t walk correctly, all the way to extreme cases such as paralysis! At three weeks old Ellee had to have an ultrasound and MRI on her skin tag and back. we got various answers from everyone and the neurologist doctor we saw actually told us that ‘all three weeks old baby’s backs look like that on an MRI’ and not to worry. He said that we wouldn’t assess the issue again unless she started showing symptoms most likely around age four or five. He also got after me for googling symptoms and signs and laughed at me when I asked him if the reason Ellee had a fuzzy patch of hair above her butt was a symptom of a tethered spinal cord. He said all babies can be fuzzy there and that was normal. Cory and I were ecstatic but thought it best to get a second opinion since our pediatrician still thought something was not right. After that we scheduled an appointment with a traveling pediatric doctor for Montana. We had to wait SIX MONTHS for this appointment and the first thing he said to us when we walked in the room with little Ellee was ‘I’m not quite sure why they sent you here to me I am the complete wrong doctor for this’. We were furious, however he looked over Ellee’s MRI and gave her a physical check up and thought she looked ok. He told us that eventually if we wanted definite answers that we should think about going to the professionals in this field at Seattle children’s. Cory and I went back and forth but something just didn’t sit right with us an ultimately we decided that even after multiple doctors told us she was ok, that we would still go to Seattle for a third opinion! We packed up both kids and drove 10+hours to Seattle in October. We decided to make a vacation out of it so our son would have a good time and we did! Besides the doctors appointment it was a nice getaway, however, the doctor did confirm that Ellee definitely had a tethered spinal cord. He had never looked at her MRI scans until that moment we were in the room together and within 30 second of looking at her scans (which were the same scans from when she was 3 weeks old) he said there were MULTIPLE SIGNS that she needed surgery right away. He also assessed her skin tag and mentioned that her little patch of peach fuzz above her butt was a definite sign as she isn’t hairy anywhere else! We were devastated by the news but so happy we got the answers that we needed in time!! The doctor scheduled her surgery for February 22, 2018. He wanted to wait until she was at least a year old since anesthesia is hard on a little developing brain but wanted to do it before she was a year and a half because they get too wild and hyper at that age that they don’t heal as well. Also, before she hit any of her big growing stages. If the surgery goes as planned they do not believe that she will have any nerve damage since we caught it so early!! There is however a big chance that the spinal cord will retether to the scar tissue from the surgery or potential spinal fluid leakage so there may have to be multiple surgeries within the future to make sure it stays untethered. We definitely have a long road ahead of us but are so happy and blessed from all the support we have received! Little Ellee Rose is such a blessing and beautiful happy little girl. You would never know anything was wrong with her spine if she didn’t have the skin tag. She’s super active and hitting every milestone and will be celebrating her first birthday next week! Please feel free to get in touch with me if you have any other questions about Ellee’s journey. We know our story is long and confusing. We are happy to share our story in the case that it will help others! Thank you for taking the time to read this. We love you all!