April 24, 2003 was by far the happiest day of my life. Liat was finally born and seeing Ilan hold her brought nothing but happiness to my heart and tears to my eyes. The labor and C-Section was a lot tougher then either Ilan or I were prepared for, but in hindsight, it was well worth it. Life took a drastic turn at that point. I literally became a feeding machine and for a short while Ilan did nothing but change diapers (too bad that had to come to an end). But no matter how tired I felt, merely looking at Liat filled my heart with joy. I could not imagine a more perfect infant. She was so tiny, so cute, and so innocent.
About two weeks after Liat was born, we noticed a little pink “rash” on her forehead. At the time we really did think it was just a skin rash. It was barely visible. When I asked the pediatrician about it, he said it was a hemangioma sometimes referred to as a strawberry birthmark. “A what?” I thought to myself. He said it was a vascular birthmark and there was nothing to be worried about. He suggested we do nothing about it and allow it to take its course. What course that was we weren’t quite sure.
As soon as we got home I jumped on the Internet to do some research on strawberry birthmarks, since I couldn’t remember what that ‘heman’ word was. The pictures I saw looked nothing like what Liat had at that time. So I felt relieved. However, as I continued to read more on hemangiomas, I realized that Liat’s birthmark was only at the start of its development. What I learned was that:
After reading all that, I can’t say that I felt all that great; however, I did tell myself that Liat’s little pink rash could never turn into those “monstrous” bulges I saw online.
With time this “little rash” got darker and darker. It now had a real strawberry red color to it. Often when my parents would come to see Liat they would tell me that it got bigger. I would shrug my shoulders and say “Ya, it did.” I didn’t really know what more to say. Liat was still the perfect little baby to me. And as time moved on, her strawberry became darker and bigger. It was no longer flat. It was raised and very noticeable.
Although to myself and Ilan the hemangioma didn’t look like anything gruesome, to others it looked awful. Whenever we would take Liat outside, people would turn their heads, point, and stare. Children would always ask what happened to her. And the worst of all were those looks we got from people thinking we did that to her. We weren’t abusive parents and I hated the thought that people would even consider the idea of us doing this to her.
There were a few times when I wanted to put a hat or something on her head to cover the hemangioma so that I wouldn’t have to deal with the emotions I felt when people would stare and comment about her forehead. It definitely saddened me that people couldn’t see beyond that bump on her head. Even worse was hearing people say, “If she didn’t have that bump she would be perfect.” I kept on telling myself that those people were just ignorant. In my eyes Liat was nothing short of perfection and it was unfortunate that others didn’t see it. And so I quickly realized there was no point in trying to hide it. Do I really care that others don’t see Liat’s beauty? Actually I did a little bit (sometimes a lot a bit).
Now my thirst for knowledge about hemangiomas intensified. I wanted more answers but even more I wanted someone to tell me what to do. So I turned to what Ilan and I call the Parenting Bible, a book that my pediatrician told me about that comes very handy to first time parents: Caring For Your Baby and Young Child: Birth to Age 5, by the American Academy of Pediatrics. And although I value all the information this book has to offer, at the time it didn’t give me any new information. The book suggested we leave it alone. I guess I didn’t want to leave it alone. I didn’t want my first born child, my daughter, my Liat to have this on her head.
As Liat got bigger so did the hemangioma. When we went to another visit at the pediatrician, two of the other doctors told us that there are things that can be done to help stop the growth and/or remove the hemangioma. Now I felt a bit satisfied. The pediatrician gave me a name of a dermatologist who she thought might be able to provide us with more answers. Of course, I rushed to make an appointment. The only information the dermatologist provided us with is the information we already knew and a name of a laser specialist that might be able to help.
I was informed that the laser specialist, Dr. Roy Geronomous, had quite a reputation and that I may wait long for an appointment with him. I hurried to call for an appointment and although I was expecting a long wait, it was actually for 3 weeks later that the appointment was scheduled for. Liat was about 2 months old now.
Anxious to go hear what this renowned doctor had to say, I was expecting to hear that it was now at its worst and 1 or 2 laser treatments will make it disappear. So to my disappointment none of that was said. Dr. Geronomous said that the hemangioma will continue to grow until about 2 years and then it will begin to involute. He measured the hemangioma and said that it was deep under the skin. What exactly that meant, I wasn’t really sure. I wanted to know if laser would help. He said laser would make it lighter in color and that it might help slow down the growth. At that point I was a bit upset that we didn’t come earlier. Maybe if we came sooner, the hemangioma wouldn’t have gotten that big. Dr. Geronomous assured me that it’s unlikely that if we came sooner it wouldn’t have reached the size it was currently. So what should we do?
Dr. Geronomous suggested we start laser treatment right away. Laser on my 2 ½ month old baby?!? Suddenly I wasn’t so sure about it. I asked the doctor what it’s like. He explained that they cover her eyes so as not to damage them with the laser and he zaps the hemangioma in numerous spots. He said the laser feels like a pinch. Hey, that didn’t sound so bad. So Ilan and I asked for a few moments to discuss it. Insurance covered it, a pinch didn’t sound so bad, and there were no side effects, so we agreed to give it a shot.
The nurse and Dr. Geronomous came back in the room and handed us goggles. They asked me if I wanted to stay in the room. My gosh, of course I wanted to stay. The thought of leaving Liat never entered my mind. I knew I could be strong for her. So the nurse and Ilan held Liat down and Dr. Geronomous began zapping. In reality the entire treatment lasted about 30 seconds, but for me it seemed like hours. I never before heard Liat cry that way. Her face turned all one shade of red and she was extremely unhappy. Tears filled my eyes. I felt so bad for her. I wished for a way to make that pain go away. She didn’t deserve to feel that. When it was over, Ilan held her and she just continued screaming for a while. Honestly, no words can really describe how I felt at the time.
The ride home was awkward. Ilan was driving, Liat fell asleep, and I was sitting in the back wondering if we did the right thing. That was the first time I asked myself, why did this have to happen to us? I cried and cried. Ilan told me that Liat was getting her “bad thing in life” out of the way early, so her future would be filled with good luck. I don’t know why, but that made me feel so much better.
The laser treatment caused the hemangioma to blister and look even darker in color.
It got worse before it got better. The fact that Liat kept on scratching it, didn’t really help. There was literally a crater in her hemangioma. It looked horrible. Believe it or not, 3 weeks later we were back for the second treatment. I wish I could say that each treatment was easier for Liat and for me. But the truth of the matter is, each treatment was heart wrenching. During every treatment she screamed and every car ride home I cried and wondered, why us? Liat went through 5 laser treatments and two shots of steroids, before we realized it wasn’t really helping. Dr. Geronomous then referred us to a surgeon who specialized in birthmarks, Dr. Barry Zide.
In the meantime, Liat continued to grow and develop a personality. She was so much fun to be with. But the awkward looks, hidden whispers, and my all time favorite, “Oh if only she didn’t have that on her head…,” all continued. I didn’t want Liat to continue going through this as she got older. I especially didn’t want it to impact her self-image and/or confidence. So we went to hear what Dr. Zide, the surgeon had to say.
As soon as Dr. Zide saw Liat he said this would be as easy as 1, 2, 3. It was a nothing job according to him. Although that sounded good, we still had many questions. We told him that she had gone through 5 laser treatments and he immediately said that laser was a waste of time for something that deep and big. He said that the doctor that did the laser wasted our time and money. Then when he heard it was Dr. Geronomous, a friend of his, he said “don’t tell him I said that.” It was pretty funny. Dr. Zide told us to come back in three months to look at it once again and to schedule an appointment for surgery. I just wanted to know why we can’t do it sooner. Why prolong this anymore then we already have. He said that he wouldn’t recommend operating on her before she was a year old.
Three months flew by and we went to see Dr. Zide again. At that time he explained to us the process. He said he would attempt to take out as much of the hemangioma as he could and stitch it up horizontally so as to allow the scar to fade into her natural forehead lines. He said she would require anesthesia and that the entire hour operation would take place in his office. So we scheduled a surgery date for June 8, 2004.
Anxious for June 8th to arrive, many times I asked myself if maybe we should just wait with this. I felt as though she was too young and way to precious to me to take the chance of anything going wrong. However, we decided to move on with it and only pray for the best.
On the morning of June 8th, Liat had no clue what she was about to endure. On the way to Manhattan I stared at her and cherished every moment I’ve had with her thus far. She sat in her car seat completely relaxed and innocent…it was a beautiful sight.
We got to the office and everything seemed to happen so quickly. Dr. Zide and Dr. Zimmerman (the anesthesiologist) asked us to bring her into the operating room, and they got an IV going. Ilan helped hold her down and in one try Dr. Zimmerman got the IV and anesthesia flowing. Liat was screaming and crying staring into Ilan’s eyes as she suddenly fell asleep. My heart must have skipped a few beats after seeing that. I told Ilan that the last thing she saw before she fell asleep was him, so she would blame him for any pain she would feel afterwards.
Ilan and I went to sit in the waiting room….waiting and waiting. We kept on talking about Liat and all the crazy fun times we’ve had with her. I guess we were just trying to make the time pass by. And about an hour after leaving her in the room the nurse told us that everything was okay and they want us to go into the room so that when she wakes up she sees us. We rushed to the room to see her little body on the big operating table. It just didn’t seem fair. She no longer had the IV in her. Ilan picked her lifeless body up as she began to wake up. It took Liat a few minutes to wake up. She would open her eyes and then dose off again. But the entire time she was in Ilan’s arms. We couldn’t really see anything because it was all bandaged up.
But Dr. Zide said it went well and he took out 95% of the hemangioma. We received our care instructions and an appointment for next week to remove the stitches.
The car ride home started off really well. I sat with Liat in the back, holding, hugging, and loving her. I was so relieved to have her back in my arms. I began telling Ilan that she’s taking it really well. She wasn’t crying or acting cranky. She was just acting tired. Of course I spoke too soon. Moments later, (I guess when the pain killer wore off) Liat began to kick, scream, and cry. Nothing I did calmed her down. I couldn’t control her. Ilan pulled over and we switched. I drove as he held Liat. I just cried and cried. I couldn’t understand why she didn’t want me to hold her. I wanted to make all her pain go away, but I didn’t really know how.
The day after the surgery we removed the gauze and were really shocked. The stitches looked nothing like what we were expecting. It looked like an “I”, two horizontal lines and a long vertical line.
It was bloody and not at all appealing. For the next day, actually week, we just soothed her and gave her everything she wanted…watermelon, chocolate, dancing, daddy, etc. A couple days later her eye was shut due to the extensive swelling. She looked like she just came out of a boxing match.
It was a tough week, especially for Ilan, since she only wanted to be in his arms. But honestly, for the most part she was a trooper. She handled the surgery and pain really well.
A week later her stitches were removed and as time moved on the stitches underneath dissolved. Every passing week it looked better and better. Today, nearly 6 months after the surgery, I look at her and feel so glad that we went through with the operation. Now when people look at her they can appreciate her beauty the way we did all along. No longer do we hear those unnecessary comments and hidden whispers. Now people stare because they see such an adorable and loving child. The funny thing is when I look back at pictures of her when she had the hemangioma, I am shocked at its size. Was it really that big? I honestly never realized how big and noticeable it was until I see her now without it. Her hair grew in where the bulge was and the color faded a bit. Now people ask us how she fell. Hey, at least we are not assumed to be abusive parents any more.
For me having a child born with a hemangioma was a learning experience. At first I pretended that it didn’t bother me. At times it was hard to cover up the pain I felt when people commented and stared. With time and research I learned that there are many kids who have vascular birthmarks and lead completely normal and healthy lives. And that’s what was important. Liat was healthy and happy, and I couldn’t ask for anything more. In hindsight, I wish I never said, “Why did this have to happen to us?” There are children in this world who suffer from illnesses and painful experiences that don’t go away. Liat merely had a minor cosmetic flaw, an ‘angels mark’, as many referred to it. I didn’t have the right to complain.
Today Liat is 18 months old and she’s absolutely adorable. Every day I look at her and feel like the luckiest person in the world. What did I do to deserve such a beautiful and loving child?
Useful links to other hemangioma resources on the web:
This site was last updated 01/18/09