I don’t like to share private matters on-line, yes I know it seems to be the “norm” now days but I personally try to steer clear of sharing intimate details or heartbreaking ones with strangers. Recently a friend suggested that maybe, just maybe it would help someone else out there to do so, even if just to let them know that they are definitely not alone.
I suffered four miscarriages, two of them were before I actually gave birth to my first child, a daughter Ellen. To sum up as best I can I bled for 10 months after giving birth to her, you heard that right 10 months! The doctor that delivered her kept telling me not to worry about it , it took months to get another doctor to look at me because I was another docs patient! As it turned out an old family physician that had taken care of me growing up called me back immediately after I called for his advice and told me to go to a nearby hospital immediately where there would be a Dr.Mavis waiting for me. The doctor was appalled that I (sorry to be graphic here) had been suffering with retained placenta for all those months and admitted me for an immediate D&C, I had no one there to watch Ellen until my mother could get to the hospital so while they had me out and were doing the procedure, the nurses took care of my daughter. It was over, I went home and was grateful that I had finally found someone to take care of the issue, boy was I in for a shock.
After Ellen was born I noticed two small translucent brown spots on her shoulder, the doctor said they were birthmarks but each week there appeared more of them, every appointment I had the Dr. said the same thing that they were merely birthmarks. Even though I was young it made no sense to me, I told him that I though that birthmarks meant born with he would rush me out telling me that I was a typical first time mother that fretted about nothing. By ten months of age my daughter was covered with the same looking spots sparing only her face, hands and feet!
A matter of days after I got back from the hospital having the D&C behind me a man came to my door demanding to see my daughter, he explained that he was from Children and Youth Services and that they had received a complaint from the medical staff at a nearby hospital! I was mortified when he told me that they had reported that my child was covered from head to toe with BRUISES! You can’t imagine the disgust I felt having a male stranger examine my child’s body, I began shaking and crying as I explained to him what my doctor had said and that even though I didn’t have a medical degree that if they were bruises they would not all be identical in color! Luckily he agreed but said he’d never seen anything like it and that I would have one month to have her diagnosed for the issue or I would have her taken from me! That was the beginning of a turmoil that would last for many years to come.
We ended up taking Ellen to doctor after doctor all around our state without one of them being able to diagnose her, the C&S worker allowed us more time due to the fact that we had an upcoming appointment in New York State with a doctor there. After that particular appointment consisting of all kinds of tests which included a skin biopsy we were told that she suffered from a mast cell disease that there wasn’t much known about. I was heartsick but relieved that at least it would take care of Children and Youth threatening to take our child from us!
It would take relocating to Florida to get some real answers as well as years on end of my doing my own research. Ellen had Urticaria Pigmentosa, a cutaneous form of Mastocytosis a rare mast cell disease. To this day the doctors all about our area haven’t the slightest clue as to what mastocytosis is and the majority have never heard of it. In the early days after her being diagnosed they tried a medication (an orphan drug at that time) called Gastrocrom which went for nearly $200.00 for each months supply, we were not rich and our insurance would not cover it, to say that we struggled would be a gross understatement. When Ellen was 10 years old and began having trouble walking and suffering bouts of unbearable pain we learned that she had osteofibrous dysplasia in the bone of her tibia, a rare benign condition with no known cause which causes fibrous tissue to develop in place of normal bone causing the bone to deform or fracture. We took her to Dupont Institute in Delaware to have surgery on her leg, as if she hadn’t been through enough.
Ellen’s disease will be one that will last all through her lifetime, she has good and not so good days but I am happy to say that she is healthy in spite of her disease. There are people out there that intentionally harm their children, don’t even want their children and abuse the hell out of their own children, to think that we could have lost our child due to a rare disease that physicians all over the place knew nothing about and rather than try to investigate, threw their hands up in the air is a terrifying thought. What I have learned from all of this is that if you know (a mother always does) that something is wrong with your child and can’t get a doctor to listen or care, do it yourself. Thank God we have the inter-net now days because back then there was no inter-net, there were only medical libraries none of which were in our area but that didn’t stop me. Do it yourself if no one can or will help you, like our own bodies we know better than anyone does when something is wrong with our children!
I truly hope that none of you ever have to experience anything similar to this situation but if you do, feel free to contact me and whatever you do don’t give up, especially if you are dealing with a rare disease. You may feel like no one in the world can understand, like not a soul out there cares but that’s not true, really it isn’t. To think that someone can just waltz into your home and because they are not familiar with something take your own child away from you is unimaginable but it has, could and does happen. Don’t be a victim of a system that can be beneficial but also very flawed.