Baby Violet’s Medical Support

When she was first born right off the bat I noticed something different about her forehead. I noticed something different about the light little pink marks on her body. My concerns were shoved away and we were told they were nothing to worry about.

Mother’s intuition would not stopping chiming in. I felt deep down there is something more to this. There is something more to all of this. I wanted answers. Legit answers. I wanted to be heard.

The first round of doctors all told me “Oh these are just birth marks. They will grow some and then go away.” Well not only did the one she was born with grew some but multiple began to pop on my 1 month old baby’s body. At this point I was tired of everyone not only doctors saying it was nothing. It seemed like anyone who felt they had a medical background wanted to chime in and tell me how it’s not serious and to drop it.

Well I didn’t. I pushed for those answers as I saw these growths only getting worse. We finally got to a doctor who was willing to do a scope and see if there was anything internally going on. And guess what?! Sure enough there they were these “birth marks” growing inside my baby’s air ways and throat. At that point we got sent to Utah to actually be seen by doctors who specialize in rare cases and most importantly in children and babies.

Come to find out these “birthmarks” that I should just let go and forget about are actually considered begin tumors. Yup tumors! They are vascular abnormalities and growths. There are multiple kinds of treatment for them. Including radiation. These are serious. These are not something to just let go and be. They can become internally invasive and cause serious harm.

She was originally put on Propranolol to slow her heart rate and slow the blood flow which would hopefully stop the growths. She began to have adverse effects and was taken off the medication due to heart risks. During that appointment I decided to bring up her forehead shape to her doctor in Utah. Since that specific specialist does not deal with craniotomy she said to first speak with our pediatrician and go from there.

After speaking with the pediatrician he also agreed something was off and a bit abnormal with Violets head shape. The pediatrician then sent us to a neurologist. The neurologist felt it was Craniosynostosis and wanted us to be seen by another doctor that same day. We were then seen by 2 more doctors. A craniosynostosis doctor and neurologist who team up on surgeries together. They both felt it was mild craniosynostosis and wanted a CT to confirm and determine if surgery was needed or if monitoring was needed.

Something just didn’t feel right to me. I just didn’t trust them in all honesty. I also did not want to have to put my 7 month old baby through radiation from a CT unless absolutely needed. So I reached out to her already established doctor in Utah and she magically got us in with one of the best pediatric craniosynostosis and neurologist doctors at the Primary Children’s Hospital in Utah.

Once we were seen by the craniosynostosis doctor and his medical consultant right off the bat with no hesitation they looked at each other and said “Violet does not need a CT she needs an MRI. This is not craniosynostosis but we feel there is clearly build of something under the skin of her forehead and hopefully just the exterior of her skull.” They do not feel it’s fluid because it dense but not dense enough for it to be bone. They believe it’s a vascular abnormality as it is safe to assume with her already diagnosed condition. Which means a large growth/tumor on her head. This can be minor or very serious. It could be just on the exterior of her skull or it could be coming from her brain. All these things we do not know until an MRI is done.

They have worked on rare cases like these and also have another surgeon they will be bringing on board if it’s vascular who specializes in pediatric vascular neurosurgery.

At the moment we have to pray and stay positive as hard as possible that it is indeed superficial and it’s not in her brain.

If I did not pursue these “birthmarks” our baby could be having serious complications by now since these things would of most likely popped up every where and grown even in the most vital places like her brain. The need for awareness on Cavernous Hemangiomas and Hemangiomatosis is needed. Just because you have a baby or know someone who had a baby who had one or two hemangiomas does not mean that there are not more serious complications with these.

Here’s to Violet! We are positive her MRI will be  fine and the results will be even better. She has to be put under anesthesia to get the MRI done and the team of doctors will be reviewing the MRI immediately and then having a meeting with us. Her scanning will be done November 26, 2019. 

We have been going to Utah every 4 to 8 weeks within the past 7 months. Paying for hotels, food, travel, etc. The medical bills are piling high. Due to the amount of travel, hotels, and medical bills we will be creating a GOFUNDME. As many of you know I am a hard working full time woman plus mom of our baby Violet and her 4 year old brother Oliver. Dad is also a full time hard working man and father but we can only do so much. Anything you can help to provide for our family is so appreciated. 

I do not ask for anything. I HATE asking for anything. I have been digging my heals in so hard to not have to ask for help from my community and friends but I need to let my pride go and just accept any help our family can be given.

Once we get a solid result from the MRI on November 26, 2019 we will update further. If surgery is indeed needed we will need to raise our current goal funds to help with the surgery and whatever it may entail. I will post as many pictures of our daughter’s condition as possible and will possibly be able show the MRI scan once I get copies. 

We are being seen by a pediatric cardiologist, pediatric dermatologist, pediatric craniologist, pediatric neurologist, pediatrician, and soon a vascular neurologist as well as a geneticist.

From the bottom of my family’s heart we appreciate your time for reading our daughters story and considering helping us get through this. 

Makena (Mom) / Dallas (Dad) / Baby Violet / Oliver (Older Brother)
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Makena Henze 
Sparks, NV