Thursday, December 1, 2011

Hemangioma Hell: Not All Strawberries are Sweet

My daughter is 3 months old. She is perfect. Obviously. Her sweet little body contains three hemangiomas. Some people refer to hemangiomas as "strawberries" as it calls to mind the red appearance of the fruit, though not all hemangiomas are of the "strawberry" variety. A hemangioma is an abnormal grouping of the blood vessels within the skin. There are theories here and there about the cause of them, but nothing truly conclusive. There may be a genetic component. For the most part they are benign and don't cause complications other than appearance issues. Sometimes they can be internal and interfere with breathing, vision or they may sit on the liver or brain. Most hemangiomas will go away on their own by the age of 10. Some require treatment (medicine, surgery, laser or a combination) if they are causing blockages, bleeding or ulceration.

Little Lady has one near her eye, another on her inner thigh and a third on her labia. Like most hemagiomas, they were not noticeable until she was a few weeks old, at which point they began to grow rapidly. These little bastards tend to grow at a fast rate before slowing down between ages 6 months to a year and beginning the process of involution - disappearing. At first, I thought the one on her labia was diaper rash. I was applying ointment to the area and, seeing it grow and not resolve, began to worry. I took her to the pediatrician, who thought it was a hematoma at the time and wanted to keep an eye on it. At that point, it was still flat and just looked like a small red mark and we thought maybe we had cleaned her a little too vigorously or even caught the area in a snap when closing her onesie. I, of course, felt horrible to think I could have hurt her. It grew quickly over the next few weeks and was then evident to us and her pediatrician that it was a hemangioma. He was not concerned about the other hemangiomas, because they weren't growing as quickly. The one on her labia is a concern as it is the fastest to grow and there is worry that it could either cover the opening of her vagina or block her urethra. Since it's being peed and pooped on all the time there is risk that it could become ulcerated, which it has. That carries a risk of infection. He referred us to a pediatric dermatologist.

I live sorta close to the Children's Hospital of Philadelphia (CHOP). They have a specific infantile hemangioma program. I learned, over the course of a few weeks, that they were among the top when it came to dealing with them. Not all dermatologists are created equal. So, we chose to go to CHOP since this is something they literally deal with everyday. This began a roller coaster rise of bullshit with insurance. My husband and I don't have medical insurance, despite being employed. We can't afford it. We receive state aid insurance for our two kids. Long story short, Morgann was not covered under a plan that I chose. The state had made some error and picked one for her, without giving me the option of choosing first. It turns out that CHOP does not take her insurance. I spent hours on the phone with dermatology one day trying to figure out her coverage and then trying to work out billing, which they said they cannot do, despite claims of CHOPs "wonderful" financial assistance program on their website. We went back and forth over whether or not they would even see me. An appointment costs between $200 to $300 just for the initial consultation - money we don't have. I was upset. I called the insurance company to get a list of dermatologists who they do cover. There were only two, both of which were an hour away and both of which said I would be better off with CHOP. Thanks. I decided to switch insurances companies to one that CHOP accepts, something that would take until the new year to become effective. I called various financial and business offices within CHOP, before I was finally told that I could just use the state ACCESS card as insurance until the new insurance took effect. Fine. Perfect. Awesome. I went ahead and made an appointment. The appointment was earlier this week.

After 2 hours of one of the worst commutes of my life, I finally arrived at CHOP. Once in the dermatology office, I explained what I was told about using the state ACCESS card and the receptionist has no clue what I was talking about. My heart sank. She said they would still take me (trust me, I would have raised hell if they didn't), but I would have to sign a waiver stating I'd be responsible for the bill if the insurance didn't work out. What could I do? I signed it. I'll fight it if I do get billed. #1 - after explaining my situation, the head of their business office told me to use my ACCESS card and tell the dermatology receptionist to put it through as medical assistance. #2 - the hospital makes a grand gesture of promoting their wonderful financial assistance policy. I have no problem pointing that out to them. If I have to make small payments, rather than one lump sum, then that's fine.

The doctor was very nice. Little Lady loved her - it helped that she - Little Lady - was buck naked for a good part of the visit. She loves being naked. She determined that the hemagiomas near her eye and inner thigh were not a concern at this point, although the one on her inner thigh has spiked in growth these past few weeks. She was definitely concerned about the one on her labia. It's now the size of entire labia and has ulcerated quickly in the past couple of days. We discussed several treatment options. The best option for her is a drug called propanolol. It's a beta blocker and is typically used to treat high blood pressure. Years ago, they found that it shrinks hemangiomas - an quickly to boot. The downside is that it has the potential to cause hypoglycemia, low blood pressure and heart rate abnormalities. Those side effects are rare, but CHOP likes to admit patients on propanolol for the first three nights of their treatment. So, she'd have to stay in the hospital for 4 days, 3 nights while they monitor her heart rate, blood pressure and blood sugar. Doc said the vast majority of patients don't show any side effects and that they will probably discontinue the mandatory in-patient assessment in the near future. That brings me to scheduling the admission to the hospital. I have to stay with her for those three nights, so I need to arrange care for my son. My husband is currently not driving due to optic nerve damage caused by optic neuritis. It's slow to heal and he has a small blind spot. I'll need to rely on my parents to get my Little Dude to school if the weather is crappy (otherwise, he can walk with Daddy). CHOPs policy is to submit the request to their scheduling department, who then makes the appointment with you. In the meantime, the doc prescribed metronidazole gel and lidocaine gel for her labia. Nightmare begins.

In the past three days I have gone back and forth with every financial and business office at CHOP. I'm told, "yes, we'll accept your ACCESS card. " Then it's, "no, that's incorrect. We can't accept your ACCESS card. It doesn't work that way." Long story short (haha), they will attempt to petition Little Lady's current insurance company (coverage ends December 31) for out-of-network coverage. Her hemangioma simply can't wait until January 1st when the insurance accepted by CHOP becomes effective. I've been through hell since I left the dermatology office. I've been sad, angry, relieved, sad, angry and, now, waiting. No word yet on whether they are going to authorize this.

Sigh. I've been so busy fighting with insurance companies, fighting the pharmacist (they also gave me trouble about insurance and treated me like shit), calling offices, praying, crying, pounding tables and making threats that I have not even had time to sit down and process the fact that me and my daughter will be staying at the hospital for three nights. I haven't had time to face the fact that this terrifies me - I'm afraid of being away from my husband and little boy. I'm afraid of the propanolol. I'm worried about side effects. It also doesn't help that she is in severe pain. She can't pee without screaming most of the time. I can only use the lidocaine three times a day. This little baby typically loves to have her diaper changed. It means she'll be partially naked. She usually smiles, laughs and kicks her chubby little thighs. Now she screams and tears stream down her sweet face. The pleading look in her sweet eyes kills me.

It also lights a fire under my butt. No one - not an insurance company, not some stupid hospital policy, not some medical bureaucrat - is going to stop me from getting help for my daughter and making this pain stop ASAP. I promise.

Click here for an update. 


Big Families Rock said...

Praying for your daughter and it all works out. I love your blog. I just started my blog, feel free to stop by.

Funky Little Earthchild said...

Thank you for the prayers. Things are getting better. I'll have a follow up post soon. I'll definitely check out your blog. :-)

Padmavani said...
This comment has been removed by the author.
Padmavani said...

Do you mind letting me know how she has progressed between the time you posted the update to this and now. I would truely appreciate knowing. Thank you very much.

Funky Little Earthchild said...

She is doing very well. :)

Susanna Penniket said...

Hi there, my four month old has a similar hemangioma. Hers has grown inside her "lady bits" so there is talk about similar drug use for her as you went through with your daughter. Can you please tell me if there were any side effects and if you would recommend we go with it? It is so hard to know if we are making the right decisions.
Thank you x

Funky Little Earthchild said...

Hi Susanna -

My daughter did not have any side effects. They do worry about low blood sugar with it, so you have to make sure she is taking a bottle or nursing. She remained happy and alert while on the medication. It worked very well and it definitely shrunk the hemangiomas. The most noticeable shrinkage was on the labial hemangioma. I definitely do recommend considering it. :)

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