Rachel

Segmental Hemangioma

Rachel's Story

When Rachel was born, we noticed some bruise-like markings on her face. However, we were primarily concerned about her ear – the top portion of her ear was nearly black in color and was very limp and flat. Little did we know that our journey was just beginning. From there, things went from bad to worse – the first doctor to address her “bruising” entered my room in the hospital, and woke me from a nap with the words “Your daughter’s markings are not bruising. It is a port wine stain and based on the location, she is going to have severe brain damage. She must have a CT scan right away!” I was alone, had just given birth and I was terrified. Then, I had to call my husband and break his heart too. I immediately dismissed the doctor and called the nursery for Rachel to be brought to my room. I just wanted to hold her. As her mother, it is my job to protect her and keep her safe, and all my illusions about my power to do so were crushed. We were not even considering the social impact of her condition at that moment.

At her two week check-up at the pediatrician, I was approached by a young boy. He ran to me and said “Miss, miss, do you need help? Is the baby bleeding?” He could see the hemangiomas from far away and noticed I was crying and he thought that I needed help. He was not being hateful, but his statements were so hurtful. I could not believe that this is the way the world would see my beautiful new baby.

Over the next three weeks, we were seen by three additional “specialists.” All of them said something different, only one actually came up with an accurate diagnosis, but was only interested in “managing Rachel’s pain,” while we sit back and let the hemangiomas take over. We were not satisfied that any of these doctors specialized in Rachel’s condition. Also, when we asked for direction in obtaining second opinions, we were met with derogatory remarks and arrogance. I had been researching doctors on the internet, when one of my friends from Little Rock, Arkansas called and said that I had to take her to New York to see Dr. Waner. I researched him on the internet, and then called the practice. I figured that we would never get in to see him, but after a long chat with the LPN at the practice, she asked me to send photos so that she could show them to Dr. Waner. Within an hour she called me back, and asked if we could be there in two days.

So, we loaded up the family and headed to New York. We arrived at the clinic around 3 p.m. on a Friday afternoon, and I remember being terrified of all the children (patients) in the waiting room. Also overwhelming, were the stories of the patients who were featured on the waiting room’s “wall of success”. They had all been through so much treatment. Dr. Waner was able to see us at 5:30 in the afternoon – as we were a work-in appointment. I remember so clearly, that he touched and examined her like none of the other doctors had. Then, he looked right at me and said “I can help her.” I could not believe it. Rachel was four weeks old, and this is the first time we heard someone say this! Everyone else was preparing us for her future disfigurement and medical issues. Then he said “she is going to look normal” and I could not help myself – my response was “so what is your definition of normal.”

Then, he left the room and called Dr. Francine Blei – a hematology expert at NYU and she agreed to open her practice an hour early to see Rachel. Who does this? The doctors from our home town only wanted to spend twenty minutes with us – Dr. Waner was with us for two hours – on a Friday evening. And I can remember having a notepad for questions – I did not want to forget anything! I also remember him saying “relax and slow down, I am not going to leave until you have all the answers you seek.” Again, who does that? From that point on, we had hope, resolve and relief.

Suddenly, we went from feeling like we were on our own, trying to figure out what kind of treatment Rachel needed, to having the very best care for her. Dr. Waner and his staff gave us their cell phone and home phone numbers. When we called, they answered, I just could not believe it.

So, Rachel’s journey began a new chapter – that of healing. We traveled every other week to New York – one surgery and one clinic visit a month. The practice became like family to us. The children in the waiting room were no longer frightening, they were a comfort. Some of the parents we met there have become lifelong friends.

Rachel progressed amazingly with the treatments. Then, when she was about six months old and she had truly turned a corner, I remember Dr. Waner walking me back from the waiting room to the recovery room after a procedure, and he said to me “you know, your daughter was in a lot of trouble.” I wonder if he knew that I wasn’t afraid anymore. He chose that moment to share that with me because is was obvious that we could see what he saw in the waiting room on her first visit. She would look normal. Rachel is now 3 years old, and enjoys a healthy happy childhood. No one points and stares at her and her medical condition is normal for a child her age. When I think of what could have been, if we listened – I just cannot imagine.

This journey has changed us all, we look at life so differently. I have to say, I have never met a doctor so dedicated to his work, but so approachable and understanding of a patient, and the parents. I think that is what makes Dr. Waner so special.

As for Rachel, we are certain she is destined for great things. Her courage continues to inspire us all.

3 weeks

First Noticed

11

# of Treatments

Kansas City, MO

Hometown

Before Photos

rachel color
Rachel Before

After Photos

sherri and rachel