Raise awareness for Vascular Birthmarks
So where to start..... A hemangioma (which some of you are already extremely aware of) is a benign tumor also referred to as a birthmark that forms due to an abnormal collection of blood vessels that pools in one area and gets "tangled". They are known to grow within the first year (some are very small like a pea, others are the size of someone's face). Beyond the first year the growth period stops and it begins to fade over time. In most cases there is no visible trace of the hemangioma by age 10.
Hemangiomas come in a variation of sizes Francesca's is on the larger side. We have seen Drs, specialists (dermatologists and hemotaligist). We have done ultra sounds etc. prior to a few days ago the plan was to monitor the growth and no plan of action was needed. Everyone's opinion is different but Kim and I didn't feel the need to perform surgery or give our little baby girl medication at the time because of all the side effects and dangers involved in those procedures.
Sometimes the hemangioma can ulcerate forming a scab like texture on the hemangioma which could be very painful for the baby. She had a very small one which again we were advised if it bleeds (Drs have seen that before) just to apply pressure and it should stop. What happened on Tuesday night was that another ulcer had formed and had been almost carving or digging into the very soft tissue of the hemangioma which punctured a major blood vessel. While Kim was home with the kids about to take them for a walk she realized Frankie was bleeding and called the ambulance. The only way I can describe it that may allow you to understand is that the police officer on the scene had to step away and became too nervous due to the amount of blood.
Once Kim called me I left work and went to meet her at the hospital. I was happily greeted by my beautiful child. She was happy and active and alert! The bandage was applying pressure and you could see a stain on the gauze keeping her safe.
What happened next I will never be able to forget and pains me to even talk about. As the dr removed the bandage to assess the issue blood started to shoot everywhere, the bed sheets were covered. They continued to re wrap the head dressing. At this point it was just a nurse and we kept saying it was not applying enough pressure can you get the dr. I saw her eyes begin closing and I was yelling somethings not right get the dr and the nurse continued to say she was ok. In the matter of seconds she was completely blue and I ran out of the room to get the dr. Kim was left with the baby who had now become limp and not responding. They didn't allow Kim and I in the room. We were frantic and so was every nurse and dr. We called Kims uncle who is a director of pediatric health for jfk and he immediately came to the hospital. It felt like hours sitting in a waiting area. We did not feel confident and the on call Drs were not prepared or experienced in this. When they said everything was ok and I could come back in room I walked into a room of 10 physicians surrounding a blood pooled bed while Francesca was still blue, barely responsive, and having to be given oxygen... The dr was yelling she is a fighter. They quickly pulled me back out of the room as the situation was not stable. I have never been so scared and so helpless in my life. My little girl who is so happy and loving was alone with strangers and I couldn't do anything.
Finally a pediatric surgeon who had a little more confidence arrived and was able to not stop the bleeding but provide the proper attention to make sure she stabilized. They were holding her head and applying pressure for 120 minutes because they could not stop the bleeding. They needed to give her a blood transfusion which immediately helped and she was now active and waving to all the Drs kneeling around her bed. The only thing that kept her calm was both Kim and I singing you are my sunshine. They realized they could not help us at overlook hospital so the transferred us to Morristown.
I met Kim there. The bleeding had stopped and the bandaged it gently so we would be able to see if it started bleeding again. They wanted to monitor overnight because at this point no one knew the best plan of action.
Surgery is a last resort. The fear of surgery is that 1. They need to find a dr confident enough with working with such a large hemangioma on such a small patient (age and size) the physicians we spoke with were not confident or experienced. 2. The risk is that there are so many other blood vessels that if another was damaged the bleeding could get worse and more.
Most of the Drs up until this point have never seen a case with this type and this much bleeding. The other option was to have an intervention nuero surgeon do what's called an embolization. That would be a separate procedure that blocks off the blood vessel (basically glues it shut) to eliminate bleeding and shrink the cells inside. By doing so that would than allow them to do surgery and remove it. There are double the risks involved because two procedures and the type of hemangioma she has is not conducive to a embolization.
The other option is to medicate with a medication called propranolol which would shrink the hemangioma and eventually it would be gone. The risk is that the medication can take weeks and months to work and we would not lower the risk of having it bleed again and would basically be living in fear of this happening at any givers moment.
The morning after as they were drawing her blood she began to bleed again because of the stress she was under. Again, same amount of blood but this time it was stopped much quicker. I think at this point they realized they did not have the resources or Drs we would need. They contacted children's hospital of Philadelphia which had Kim and the baby air lifted here. There was a team of Drs waiting for her (surgeons, radiologists, dermatologists) where Kim felt immediately much more comfortable. They assured us this was something they have seen before.
So where we are at now.....We are home with our beautiful baby girl and The wonderful doctors at chop have decided to treat Francesca with the one two punch hemangiol which is a beta blocker and a steroid. Frankie currently takes four medications in the morning and four medications ar night. Side effects for the beta block include low blood pressure, low heart rate, and low sugar. But since Frankie is on the steroid the medications are balancing each other out and she is doing quite well. Not to mention the significant effect it has had on her hemangioma. It has decreased by 70 percent. Our lives are pretty much forever changed by this experience. Small tasks such as car rides and stroller walks are now so nerve wrecking we fear the pressure could cause another bleed. Although the risk is low it means nothing to us, we still live in fear.
This all could have been avoided if we were properly educated on hemangiomas. I read a ton of information online and i also thought we sought the best care in New Jersey. I apparently was going to the wrong resources for information. I would never want another parent to ever have to experience the horrific nightmare that we did. That is why it is so important to us to raise awareness to Vascular Birthmarks.
I can not begin to thank the founder of birthmark.org. In a matter of a week Linda had taught me to be my childs advocate while in the hospital. While we were in the hospital she took the time out of her day to spend a hour on the phone with me educating and comforting me. At the end of all of out conversations she would remind me that this was much harder on us then it was on her and that she would be ok. This website is amazing and provides such great resources to parents for children with vascular birthmarks.