Our Hemangioma Journey

I ask that anyone reading this blog today, keep the Armstrong family in their prayers as they are enduring the 4th anniversary without their son, brother, uncle, husband and friend. Rob was an amazing individual and I was honored to have known him as my brother's best friend. He surely died too young and suffered too long. May peace be with his family at this time.
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This post is going to be different from the rest as I am using it as a tool to educate and help other families who have dealt and are dealing with a certain birthmark called a Hemangioma. It's funny, the word literally rolls off my tongue and yet so many others have a tough time pronouncing it. Maybe it is because I have become immune to the word and it doesn't seem so scary to me anymore. For those of you who who have just begun your journey with a hemangioma or hemangiomas, and it is a journey, I promise that you too, will someday learn to say the word with second nature. I hope this post does truly help other families who are and have been touched by vascular birthmarks. Writing about our journey is always a bit emotional on my end, so please bare with me. Although it was 4 years ago, every detail is still so fresh and vivid in my memory. I will also add that without the love and support of both Billy's family and mine, we would have never made it through. They were our rock, our constant, their support never flailing even though they too, were hurting.

My water broke at 34 weeks when I was pregnant for Hannah. I sprang up in bed at 5:00 AM wondering what on earth just happened. Several trips to the bathroom later, I realized what was going on. After waking my husband from his nightly sleep induced coma, we called the doctor and headed to the hospital. Quite to my surprise, the doctors decided to keep me pregnant for another week and I was admitted on strict bed rest. Throughout the week I was a bundle of nerves as the nurses tried to prepare me for what was to come. Although giving Hannah another week for her lungs to develop, she would probably still need some help breathing and therefore a trip to the NICU for a few days was to be expected. My strong choice to have a natural child birth teetered as they felt as though my baby girl wasn't facing the right way and therefore their intentions were for a c-section. This being my first baby, I was terrified. However, my Hannah felt my fears and quickly repositioned herself the night before my scheduled induction and I was able to go along with my wishes and avoid the c-section.

Finally the morning of July 12th arrived and I went down to the Labor and Delivery room. Pitocin was started and contractions began immediately. About an hour later I decided to get the epi and it was quite an ordeal. It actually was more painful than childbirth as they never did put it in right. About a half hour later I was feeling extreme pressure and I knew something wasn't right. My doctor had forewarned me that she probably wouldn't be delivering as it would be quite some time before baby was ready. I proved her wrong. After sending my sister for a nurse, she checked me and Hannah had already begun her decent. 7 pushes later, I met the most beautiful miracle I had ever laid eyes on. I was in awe of all 5lbs 2 ounces of her. I remember thinking on the last push, "Just let me hear her cry, just let me hear her cry." No sooner did she make her appearance.. I heard the most beautiful sound ever, her cry.

The doctors took her immediately and my husband went over to the other side of the room with her. Unfortunately there were some complications with the after birth as my water had been broken for a week. Thankfully, with a lot of hard work from my doctor and me pleading with her to not do a c-section now to keep trying, she succeeded. I kept looking over at Hannah and staring at the doctor's faces to read their reactions. Finally, I saw the pediatrician walk out of the room. I looked at my doctor and said, "Is he going to bring her to the NICU now?" Her reply was, "Honey, that doctor just left without your baby. This means that she is healthy enough to be put in your arms. No NICU for her!" I cried.

A moment later Hannah was placed in my arms for the first time. She was breathtakingly beautiful. This moment was such a high for me that the only thing that could ever compare to it would be when my Layla was placed in my arms for the first time. Every inch of Hannah was perfect! The next few weeks were a blur as we were able to come home on time and Hannah stayed healthy. I enjoyed those first few weeks tremendously.

It wasn't until Hannah hit the 3 week mark that I began to notice these faded pink marks on her scalp. There were maybe 3 or 4 of them at the time. No bigger than a dime. I thought nothing of it as they were very faint. My pediatrician at the time eased my fears and referred to them as "Stork Bites" or "Strawberries". Yet, the days went on and they began to get bigger and more fiercely red. At first they were flat on her head, just as a skin discoloration. Within 2 weeks they began to raise off of her head. I desperately began to worry and my Pediatrician again, told me not to worry, that in a few months they would go away and that they were a harmless birthmark. My gut knew better, but I continued on. During the next month I began to do things that I now look back upon and loathe. We would put hats and hoods on Hannah so that people wouldn't stare. I would always try and cover her birthmarks so people wouldn't notice. I remember often being out with my best friend whose daughter was a mere 4 months older. People would constantly tell her how beautiful her baby was and then look at Hannah and literally gasp. It was heartbreaking and I truly wish I had found other ways of dealing with these parts of Hannah. I remember thinking what a poor role model I was covering up these part of Han. UGH.. I really dont even like to think about it.

At about 3 months old was when the final straw began to break. I was dressing Hannah to put her in the car so I could head to work with her. I put a hat on her head, grabbed my keys and went to pick up the car seat to head to the car when I noticed a red spot on her hat. Confused, I took the hat off to investigate. At the same moment, Hannah screamed in agony and blood started to literally gush out of her head from one of her Hemangiomas. (The Largest) I am not exaggerating in the least bit. It was pulsing out of her head. I fumbled for the closest thing around which was a receiving blanket and put it on the wound. She screamed louder. I fumbled in my coat pocket for my phone and called Billy immediately in hysterics. He had me call the ambulance and somehow made it to the house before them. It is hard to write about this day without tearing up as I can still hear her screams. I dont think I will ever forget them. En route to the hospital the EMT's tried to wrap their minds around Hannah's condition. They had no idea what a Hemangioma was. By the time we reached the hospital I was frantic. We were put in a waiting room and we waited 45 minutes before a doctor even came in. As soon as I would pull the blanket off her head, it would start all over again. The doctors looked puzzled and kept saying that we were going to have to wait it out. That these things would eventually go away. I was terrified and angry. 7 hours later we left the hospital only for the same thing to happen all over again before we reached the parking lot. Billy called the ER and we were told to apply pressure. That was it. I was disgusted.

As soon as I got home, I frantically began to search the Internet. It was at this time the term, "Hemangioma" was presented to me. I found a support group on MSN called "Vascular Birthmarks" I joined. As soon as I had finished posting our story, the emails came pouring in. Advice, comfort and direction is what I found on this site. It became my savior. It took another month for things to hit rock bottom. Sadly, Hannah had many many more episodes of bleeding. Many more trips to the ER and many more dumbfounded, arrogant doctors who hadn't a clue how to deal with her case. My pediatrician was HORRIBLE with a capital "H" and she would again and again ramble on about how these will go away and how it was no big deal. I would bring up my concerns on how all Hannah did was cry and when I went to change her diaper I would lay her down and she would give an immediate "stunned" look and then scream. Her reply to my concern was, "All babies cry." I found a pediatric dermatologist to my pediatrician's dismay. She tried to help me best as she could. She gave me some creams to try and unfortunately it only made matters worse and sent us to the ER with the worst bleed yet.

Night after night Billy and I would sit and stare at her in the swing and wonder if we would make it through the night without her bleeding. Night after night I sat in a chair and slept with her in half hour intervals. One Sunday morning the pediatric dermatologist called me and asked me if I had switched pediatricians. I told her it was my plan to do the very next day. She told me that it would be wise to do so. (I found out later that my old pediatrician had called her and said that she didn't understand why I had sought her help as these birthmarks were of no worry and would go away.. she saw it all the time.) The next morning I had her records transferred. At noon time, her new Pediatrician called me and asked me to go to a blood lab and get blood work done on Hannah, that she would see me at 4:00PM.

I did as I was told and went to see the new Pediatrician that afternoon. She called us right into a room and sat down very close to us. She looked right into my eyes and said, "Your baby is very sick. As soon as you leave here, you will be driving straight to the hospital where she will be admitted." A part of me stopped breathing, the other part was gasping in relief of finally finding help. It turns out that Hannah's hemoglobin levels were extremely low from losing so much blood during her episodes. (NO ONE EVER THOUGHT TO CHECK THIS???) Moreover she had a bunch of other issues relating to the Hemangiomas and Dr. Sowa also wanted further testing done immediately.

We drove to the hospital without passing go. It took FOREVER but finally at 1:00AM Hannah was admitted. The next morning Hannah received a blood transfusion. (Oh how I remember all of my family members running out to give blood so that she could get theirs. The thought just brings fresh tears to my eyes.) Hannah's coloring slowly came back. I remember looking at her tiny little body in the hospital crib with all wires hanging out her thinking.. "But she is looking better.. she is looking better. We've got help now. Hannah underwent many tests that day and the next. Dr. Sowa told us she was going to have a MRI done of her brain and her abdomen. I begged her to do the brain scan first and she agreed. I met with a few arrogant doctors and put them in their place. They were amused by my knowledge. I had done so much research that I think I knew more than them. At one point one of the nurses came up to me after an extremely arrogant surgeon had walked out of the room and said, "Good for you. You put him in his place. I dont often see him speechless."

The next day Hannah was rolled down to have a MRI. I was able to sit in with her. The noise was horrible. Thankfully, she was sedated. The day went on and at 7pm I remember being so exhausted. I hadn't slept in weeks. Our parents had just left and Billy and I were talking, feeling relieved that we had finally found help. An hour went by when the door opened and it was doctor Sowa. I knew right away something was wrong. My heart dropped. It was 8pm and the Pediatrician just walked into the room? She had us sit together and she faced us and said, "This is hard, Hannah has many, many, many more of these Hemangiomas on her brain." In an instant, my life changed. I cried. Billy cried. Dr. Sowa cried.

After trying to compose myself, I finally found the words to say, "I want her in Boston." Dr. Sowa winked at me and said, I have already arranged for a team to come down and transport her via ambulance tomorrow afternoon. The next day we transported her. Of course not without incident. The ambulance broke down and it took us 3 hours to get to Boston Childrens Hospital. Hannah's iv kept popping out and we had to keep pulling over so the EMT's could find a good vein. We arrived at 9:00 PM and Hannah was admitted to the NICU. I think she was the biggest baby in there weighing in the 6-7lb range at the time. I was told to wait outside the door until they got her situated. I went into the waiting room only to find both of our families waiting there in support. I remember breaking down in exhaustion.

A few moments later I met Hannah's nurse, Gwen. She was by far the sweetest nurse I had come into contact with throughout the entire ordeal. She too, had a daughter the same age. We bonded immediately and I trusted her. I sat in a wooden rocking chair for hours that night just trying to make sense of everything. The baby next to Hannah was born at 1lb and her name was "Yoshi". I felt sad for her because there was no family there to support her. The next morning I met Dr. Fishman. I was so glad to see his face as I had read all about him during my research. I immediately let him know I knew of his study and that our case didnt fit the mold. He looked impressed and I was impressed with myself at the time. I told him that I knew she was in pain when they bled as I had seen that he too, felt as though this condition was very painful, more so with bleeds. However he said to me, "The sheer pressure built up in her head from the blockages was more painful than anything." I cringed. Then I cried.

Days went by and Hannah was put on a regiment of medicines. Steroids to stop the growing hemangiomas, iron, zantac for her stomach issues with taking the prednisone and a blood thinner injection to be given twice a day to stop the blood clot on her brain. These hemangiomas were making a mess of her brain, but slowly, Hannah began to heal. Slowly, my baby began to regain her strength and her life. I met with the neuro team headed up by a Dr. Edward Smith. He was a doll. I sat face to face and asked him what he would do if this were his child and he gave me his advice. The plan was set in motion. It was at this time I remember having a conversation with him and he told me that Hannah was in mere weeks of having either a stroke, seizure and inevitably death. Had this gone on any longer, there was a very good chance that Han wouldnt be here today dancing around in our lives.

We spent a few weeks up in Boston and I slept by her crib side every night. I didnt care. I couldnt leave her and I was so relieved. The level of care at BCH is second to none. I felt that as soon as Hannah was transported there. No doctor ever had a dumbfounded look on their face. They knew what they were doing, they consulted, they made a plan and they put their plan in effect. They acted miraculously. I am undeniably grateful to them, Dr. Sowa and Dr. Pedvis the pediatric derm.

The months passed and Hannah continued to heal. I administered her meds daily and gave her the injections and I got used to it all. The bruises at the injection sights, the horrible side affects of the prednisone... all of it. I didnt care. My baby was alive. She was going to be okay. We spent many days back up at Boston with follow-up MRI's and meeting with Dr. Smith and Dr. Mulikan. I could do that drive in my sleep. Again.. I didnt care. The level of care was extraordinary and I would have driven a million hours if need be.

On Hannah's 1st birthday, I administered her last dose of steroids and her last blood thinner injection. It was the best birthday present she will probably ever receive. This milestone for me was huge because I knew then our journey was beginning it's decent to an end. (I promised you it was a journey.)

Today, Hannah is a beautiful, courageous, endearing, bold, energetic, intelligent, strong willed 4 year old. There are no lingering affects on her brain of what she went through. The Lord gave us a miracle at it's best. It is still unfathomable in my mind. (I try to remember this when she is being unbearably fresh!) She is healthy, with the one exception of her left ear tube which is something we will be dealing with in the near future and finding a way for the ear to drain properly. I am blessed. Truly blessed. She dances around my life bringing me so much laughter and joy. She is a wonderful big sister to Layla-Grayce and she is just an absolute joy. She is a tough kid and I will always credit that to the pain she endured as an infant. She brings joy to everyone she meets and most often laughter as well. She has all of her grandparents wrapped around her little finger and I look forward to the many more days that God has given me with her. I pray that she lives a long and continuously healthy life.

If you have just begun your journey, may you find peace and courage to deal with all the aspects of it. I pray that you too, find an end to your journey. Please feel free to contact me with any questions.

I will warn you that some of these pics are graphic.

Hannah, the beginning. These are all when she was between 1 week and 2 months old. Her H's actually got much bigger but I dont have any pictures from then.

After Treatment

My Monkey today.. safe, happy and healthy. If you look closely at her scalp, you can still see the red, flat hemangiomas. In a way I am glad that they still exist underneath what little hair she does have (lol) because I feel as though it will always be my reminder of how blessed we are to have her in our lives. I love you Hannah!