She is not an animal

This post was originally written in February of 2008. It was updated on Aug. 27, 2009, and moved to the front page.

"She is not an animal, she's an angel!" That is what I wanted to scream out at the overdressed snooty looking lady standing just one isle over from us. I could see her pointing, gasping, and whispering to her husband. I looked at my precious little angel, with her arms wrapped around my wife’s neck. I couldn’t help but cry. “Oh God, are you punishing my daughter for something I have done?” I had not been the best husband and father for months leading up to her birth. I won’t go into the details in this post; lets just say I would not have won any husband or dad of the year awards.

Elizabeth Hope was born on July 14, 2000, at St. Mary’s Hospital in Knoxville, TN. She was a beautiful baby, and not just because she was my daughter, even the nurses at the hospital commented on how beautiful she was. My wife and I looked down at our little bundle of joy and thanked God for delivering her with such perfection. Liz was our 3rd baby, so this was nothing new for us.

A week after we had brought Liz home, we noticed a tiny red dot on her left cheek. “Hmm, wonder what that is?” We asked ourselves. We took her to a follow up doctor’s visit and the doctor noticed the red mark. He looked inside of her mouth. I could see something wasn’t quite right. The doctor called in a specialist. Now several people were looking at my daughter’s cheek. They pulled us aside. “What we think this is is a birth mark.” “A birthmark, well that isn’t so bad,” I thought. “However, it’s not a regular birthmark.” The doctor then went into explaining all the different types of birthmarks that babies can be born with. We were introduced to names that we had never heard of before. “This particular birthmark is called a Hemangioma. “Hemangi what?” I asked. He went into explaining in details how this Hemangioma worked. “Eventually, it’s going to fill completely up with blood, and she will have a tumor on the side of her face.” “Now hold on a minute, now it’s a tumor?” “Oh, it’s a benign tumor and it should eventually go away.” “We can’t really predict how long she will have it, maybe a couple of years, maybe longer.” He referred us to a specialist. This is when things got complicated.

We visited the specialist that we were referred to and he was a very nice doctor. He examined Liz very thoroughly. The diagnoses of a Hemangioma was correct. By now Liz’s cheek had gotten much larger. The whole left side of her face was swollen to the size of a baseball. You could count the blood vessels in her cheek that were straining just below the surface of her skin. The cheek was very hot to the touch. The doctor told us right up front that he had never witnessed a Hemangioma like the one she had. He consulted with some more specialists. Our daughter became a new entry in medical journals. The tumor encompassed the area from just underneath her left eye, all the way down to her chin. Her little lips were pulled in a downward fashion along with her eye. The specialist also validated that these things normally go away all by themselves in a few years. Again, he couldn’t give us a definite time, maybe a couple of years, maybe ten. He laid out our options. We could do nothing and hope it goes away. We could give her steroid treatments to reduce the size. Or, as a last result, we could opt for surgery. Surgery was not recommended due to the location of nerves and blood vessels around the tumor, there was a chance she could lose the ability to blink her eye, or move her lips or total loss of feeling in her cheek. We decided not to do the surgery. We went with the steroid treatments. This is when hell on earth began.

I’m sure you have heard of “Roid Rage” in athletes, but have you ever witnessed a 6-month old baby in a fit of steroid rage? It will rip your heart out. We could not predict when it was going to happen. We could be at the grocery store, sitting at home, or at a family member's house. Little Liz would fly into a rage that would put satan's and his demons to shame. She would sit in the floor and bang her head on the hardwood floors. She would scream bloody murder to the top of her lungs. She would be crying, screaming, and flailing all over the place. She had superhuman strength during these fits. We would try to hold her to keep her from hurting herself. It was all we could do to constrain her. Some of the worst times were when she would go into a fit while we were driving down the road. We could not keep her in her child safety seat. She would manage to break loose from it and would get in the floorboards and scream to the top of her lungs. We were at our wits end.

Eventually, the doctor weaned her off of the liquid steroids and we tried a new treatment, steroid injections straight into the side of her cheek. For this, she had to be put to sleep. We brought her to the Children’s hospital bright and early in the morning. The whole hospital staff treated us like royalty. Of course, we were scared to death and worried about our baby. The doctor explained the procedure while we stood by the bedside crying for our daughter. The whole ordeal was agonizing. Were we doing the right thing? Would she be okay? After about an hour, the doctor entered the room and informed us that everything went fine and that she would be in recovery for a while. We were so relieved. The injections worked for a while. Her cheek shrank down to almost normal size. Unfortunately, it wasn’t a permanent fix and eventually the tumor grew again, surpassing its original size. We went through another steroid injection after that and once again, it was only temporary. We still would not consider surgery.

Seeing Liz every day, we had gotten used to her big cheek. When we looked at her, all we saw was our sweet little angel. It wasn’t until we would go out into public that we realized just how bad it was. If I had a dollar for every stare, whisper, and mean comment that people made about my daughter, I could retire a very rich man. When a grown man or woman can come up to an innocent child, look at them in horror and ask, “honey, what in the world is wrong with your cheek?” it really lowers your respect and expectations of humans. Total strangers would approach us and make rude comments under the guise as being "concerned." Just a little tip for anyone reading this, NEVER, EVER approach a total stranger to inquire about some type of abnormality that they may or may not have. It is none of your business, and try to put yourself in their shoes. It is rude and totally unacceptable behaviour. As a little baby, Liz didn’t realize that people were being so rude. But, as she got older, the comments and stares would really hurt her. “Why do I have this big old cheek?” she would ask us. We would try to soothe her and tell her that she had a “special” cheek, and that she was perfect to us. We would lay in bed at night and cry and pray for her.

As the years passed by, her cheek slowly began shrinking. Not a lot, but some. On days it would look smaller and on others larger. We kept her out of school until she was 6-years old. We were hoping that the cheek would go down more in another year. Eventually, we had to send her to school though and we worried ourselves sick at how the other children would treat her. My wife went to the school to explain to her teachers about the cheek so that they would be more informed. Believe it or not, the children actually accepted Liz better than most adults. Oh a few kids made comments and wondered about her cheek, but as time went by, she made friends and they became oblivious to her cheek.

Elizabeth is now 7-years old and her cheek still has not gone down completely. It’s more noticeable when we see her in a mirror. I don’t know why, it just is. She doesn’t seem to be bothered by it right now. Of course all of that could change depending on life’s circumstances, but right now she seems happy. It certainly has not prevented her from making friends and she has 3 or 4 boys at school fighting over her and writing her love notes.

We still pray continuously that God will heal her and the cheek will shrink to normal size. Her cheek doesn’t affect the way we see her or diminish our love for her in any way. There are just so many obstacles in life already that we don’t want her to have one more to have to hurtle.

The reason I am sharing this story is because I know that there are other parents out there that are facing similar issues and you worry yourself sick. It does no good for me to tell you not to worry because I know you will anyway. But, just know that while we may not understand why things like this happen, we can rest assured knowing that our children are gifts from God. Each one is unique and special and we need to treasure them while we can.

UPDATE 8/27/2009: Well, I wish that I had good news to report, but I don't. Elizabeth's tumor has not went down much at all over the past year. We had to pull her out of public school this week and began homeschooling her. The cruelity of her classmates became too much for her. She came home every day crying her eyes out and went to bed crying. All we can do is hold her and tell her how much we love her while she sobs uncontrollably and asks us why she has to go through this? Classmates that she has been going to school with for the past 3 years are the worst ones. One boy, named Austin, has been going around the classroom puffing his cheek out and telling everyone he has a tumor and laughing hysterically about it while the other kids laugh along. Elizabeth is crushed. She has to endure constant teasing, stares, and rude comments from both her classmates and parent's of her classmates. We were hoping it wouldn't come to this but if she is going to survive with any self esteem, we must do this. We cannot force other parent's to do their job by parenting their children the correct way and we cannot go to her school and slap respect into her classmates.

We are going to make an appointment with another doctor that is supposed to be a specialist in children with hemangiomas and vascular birthmarks. We are still hoping she doesn't have to have traditional style surgery and maybe with the advancement of laser surgery something can be done. Please keep Elizabeth in your prayers as we go through this.