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Share Your Story and Raise Awareness
How did you become involved with VBF? Why do you feel it’s important to raise awareness for vascular birthmarks and the related syndromes? Please share your story with us. Please email your photos and story to VBF at firstname.lastname@example.org
Dreger Family celebrates Day of Awareness
large right face hemangioma
On August, 16, 2004 our little miracle finally arrived! Surprise- it was a beautiful baby boy! We named him Owen Andrew and were completely in love! He was our first and we were feeling overjoyed and blessed.
When he first came out and they were cleaning him up, there was some mumble from the doctor and nurses that he had what they thought looked like “bruising” from labor. The right side of his face looked black and blue, almost purplish, like he had a real rough time coming through the birth canal. But there was so much going on, at first, we hardly paid attention.
Later on that evening, my husband Andrew was in the nursery and one of the nurses said to him, “You know, that could even be a birthmark, but the pediatrician will be coming in tomorrow morning and he will be able to let you know more.” A birthmark?!- that large on his face? We started getting nervous. Everyone kept saying, “It is probably just bruising, if not, there is so much out there that they can do with laser and modern technology these days.” That didn’t make us feel any better. But we kept trying to think- he was here and he was healthy, and that was all that mattered. Still, I remember staying up that whole first night in the hospital, holding in bed in my arms, kissing and cuddling him and whispering songs of prayers over and over, “Please God, let everything be okay.” I just had this feeling that something wasn’t right with his face. You could see the traced of an outline where it spread. I couldn’t wait until the pediatrician came in the see him. Tick, tick went the clock- he was due to come in around 7 a.m.
The pediatrician finally came in and said that he was fairly confident that it was just bruising, that the nurses said it already started to fade and not to worry, that he is perfectly healthy and he’ll see us in 2 weeks. By the time we got to our 2 weeks appointment (8/30/04), it had gone from black and blue, then faded and lightened some, and then turned a bright red. “This isn’t brusing, it would have disappeared by now, we want you to see a pediatric dermatologist/specialist.” They had no idea what it was or had seen anything like it.
Scared of the unknown, we began our journey. When we first tried to get an appointment, we were told that we had to wait 5 months to be seen! What? No way- whatever this was, started spreading and getting redder, bumpier, clusters started forming, and his eye started to become very swollen to the point where he wasn’t opening it all the way. One of our relatives pulled some strings and we were able to get an appointment with a plastic surgeon on 9/17/04. He informed us that Owen had hemangioma and of a Harvard study where they use oral steroids to suppress it from spreading. He wanted us to start him on 5 ml per day immediately and make an appointment to see an ophthalmologist that he works closely with.
After one week on steroids, we saw a good improvement, yet after 2 weeks we noticed some of the side effects taking place- increase in appetite, reflux (even with taking the zantac), and weight gain. How could such a high dosage of steroids be good for a 4 week old infant? But whatever it takes to get him better. We were told to limit his visitors, make sure everyone washed their hands, and not to take him to public places. His immune system would be suppressed while being on the steroids. We tried to remain calm, and not overreact.
Ophthalmology performed some tests at 7 weeks old and said everything looked fine, but to try patching his good eye a few hours a week. We had kept another appointment with a dermatologist. After meeting with her, we learned more about hemangioma and some other risks associated with this condition. It’s a tumor, it’s still feeding, it’s spreading, it could be internal- let’s rule that out. She wanted us to have an MRI on the head and neck, as well as see a cardiologist. Cardiology wanted us to have an MRI on the heart as well. Plastic surgery was telling us that MRIs were not that necessary, to try and start tapering the steroids, but did not want to consider laser as an option, at least not until he was much older (3 or 4). But when we tried to lower the dose, it started rebounding and growing again. He expected Owen to be on steroids until he was 6-8 months old.
Frustrated, confused, and overwhelmed, I read an article in Reader’s Digest about Dr. Milton Waner and a little girl, Aslynn Brown (Picture Perfect) in mid-October. The next morning (Sat.) when Owen took his morning nap, I started researching Dr. Waner on the internet, and found tons of articles, the Vascular Birthmark website discussion forum and the MSN support group. I joined both and got immediate responses from other moms urging me to contact Dr. Waner. I emailed him that afternoon around 3:00 p.m. and sent him pictures of Owen. He wrote us back that same night and told us that he could help us, and to set up a consultation. Unbelievable! First that he even responded, and secondly, how quick (and on a weekend). These days, it is so hard to find the kind of personal attention and care that Dr. Waner displays. I spoke with his staff that Monday and scheduled a consultation for Nov. 1st (in 2 weeks).
At our consultation, we felt comfortable and very relieved. He had
a very different philosophy about steroid treatment that was so refreshing.
We have laser surgery scheduled for 12/1/04 and 1/13/05. We are so grateful
for the support of other parents, for finding Dr. Waner, and meeting
with him. We will keep everyone posted. Thanks!
We were thrown in a loop on Tuesday afternoon when the doctors’ office called to confirm surgery information. They had to move Owen’s operation from Beth Israel hospital (east side of town) to the complete opposite side of town at Roosevelt hospital (west side). They also informed us that Owen would definitely have to stay overnight in the hospital after surgery and needed to be seen the next morning by the doctor before discharge. It would have been an hour cab ride from the current hotel we booked to Roosevelt, so we spent almost 2 hours trying cancel and rebook hotels. It was a big mess, but thankfully we were able to work something out. We arrived around 9 p.m. on Tuesday night, 11/30. Owen slept the entire car ride and after a quick feeding went right back down once we got to our room.
I was given instructions not to feed after 4 a.m., so I nursed him around 3:30 a.m. and he fell back to sleep until we left around 6 a.m. It was a 5 minute cab ride and once we checked in, me, Andrew, and Owen were taken back to the pre-op area where we waited (and kept Owen occupied) for an hour and 1/2. In total, he didn’t eat for 5 hours and was being SUCH A GOOD, GOOD BOY! When Dr. Waner and his team finally arrived, we felt so relieved. We talked to him and the anesthia team and they took Owen back to perform pulse dye laser surgery. Within 20 minutes, Dr. Waner came out and said that everything went well and to come with him- he walked us to the pediatric critical care unit where Owen would recover and be monitored during his stay (because of his age).
When they brought Owen up, he was waking up from the anesthesia, crying, and very, very bruised- black and blue over the entire infected area of the right side of his face. His right eye was swollen shut. They warned us about how he would look, but seeing it in person, was still shocking and very upsetting, which made us uneasy. He was obviously in a lot of pain and very uncomfortable. It took awhile to calm him down and get him settled. He had many wires hooked up to him. We were able to give him some Pedialite, and then about 2 hours later, I was able to nurse him. Throughout the day he was very irritable and tired. He was given Tylenol every 4 hours and the nurses were checking his vital signs every hour. Dr. Waner was wonderful- he stopped in frequently between his other surgeries to check on Owen. He was very pleased with how he looked- no blisters, no signs of scaring. He was able to answer all our questions and so was Janna, his surgerical assistant.
We are so thankful that both sets of grandparents were able to be with us during our ordeal- they were such a great support. The grandmoms were able to give us breaks with Owen and the grandpops were able to get us something to eat and help with all our gear and the hotels. They headed back home around 7:00 Wed. night and me, Andrew, and Owen all layed down. Only 1 parent was allowed to stay overnight in the hospital, so Andrew got a cab back to the hotel around 9:00 to get some rest. I slept (or tried to sleep) on a cot in the room with Owen. He did pretty good through the night- the nurses checked his vital signs every 4 hours and he got up about every 3. Now that he sleeps on his stomach, he was having a hard time sleeping on the side that he was operated on, so I tried to lay him on his side in the hospital crib. We met a lot of great people during our stay- other families that are going through medical journeys like us.
We were put on a new schedule for the oral steroids- we have to increase the dose during the next few days to help with the swelling, then begin tapering it again on a weekly basis. The goal is to keep weaning until surgery # 2 in January. We still need to be cautious of Owen being in large crowds, public places and around those that are sick, but once we start lowering the dose, we should be able to have a little more freedom than we have had in the past. As a result of Owen’s MRI on the head & neck, Dr. Waner and Janna advised us to see their neuro specialist team when we go back in January. There are some flags that were raised and we are going to have him checked out by the experts in NYC. In addition, Janna will be calling us with the date of surgery #3 that will take place at the end of February. At this time, we do not know how many more surgeries he will need- they perform them 6 to 8 weeks apart. Apparently, they will get easier as we go along. When this is all over, we plan to have a HUGE 1st birthday bash in August to celebrate this eventful 1st year.
Owen will be recovering from surgery #1 over the next week or so and the bruising and swelling should be faded in 2 to 3 weeks- just in time for Christmas. His Mom and Dad are pretty drained (emotionally & physically), but feel really good about how things went. All in all, Owen did really great and really hung in there- we are so proud of him and love him so very much. Post-op pictures are posted in the pictures section. We are so flattered by everyone’s prayers, love, and support. Thank you again- it has helped us all tremendously.
Owen responded so well to his first treatment- it took about 2-3 weeks for the swelling and discoloration to go away, but then his face really started to fade and lighten. Everyone was amazed at the difference- we were really anxious for Dr. Waner to see his progress! Owen’s last day of oral steroids was January, 7, 2005.
Wow- round #2 was much easier than round #1! We arrived at the same hotel (Skyline) around 9:00 p.m. Wed. night (1/12). Owen was an angel, sleeping the whole way up and settling back down again soon after we checked into our room. Same instructions not to feed 4 hours before, so when he woke up around 3:00 a.m., he nursed and then that was it. He awoke around 5:30 a.m. and we got ready to leave for Roosevelt Hospital.
We arrived a little before 7:00 a.m., with surgery scheduled for 8:00 a.m. and were taken back to the pre-op area to check in. We did not have to wait as long this time. Owen was the 2nd patient scheduled. A little girl named Molly (6 weeks old) from Virginia was ahead of him. I met her mom, Keely, online through the MSN support group website. She had contacted me via email a few weeks ago after finding Owen’s story and pictures. We were able to talk with her and her husband (also named Andrew) while waiting for the doctor and anesthesia team. We were so happy to be able to help another family, especially so early on. We know now how education and awareness about vascular birthmarks are so crucial right in the beginning.
Owen was still a little sleepy, just kind of clinging to me and Andrew. We really think he knew something was up again. Dr. Langer, a vascular neurologist, stopped in to meet with us around 7:30 a.m. He reviewed Owen’s head/neck MRI report and we gave him a copy of the films. Without getting into too much detail, he assured us that the findings were nothing to be alarmed about, just some things to be aware of. We were EXTREMELY relieved.
They took Owen back for surgery around 8:15 a.m. By 8:30 a.m., Dr. Waner came out and took us to the recovery area. He explained that he did not have to laser the entire area like before, only certain spots this time. He would again have some swelling and be sore for a couple weeks. We were instructed to give him a stress dose of steroids for 3 days only, to help with the swelling. Again, we can alternate Infant Tylenol and Motrin every 4 hours, as needed, for the pain. It feels like a bad sunburn and he has a hard time getting comfortable, especially when falling asleep. We are going to keep in touch with the Dr. and send some pictures in the next few weeks. We are keeping the 3rd surgery date in Feb., but he will determine whether he needs it or not, once it gets closer.
When we arrived in recovery, Owen was crying very hard (the most difficult
part). But I was able to pick him up right away. This time they gave
him the anesthesia through a mask, not an I.V. I think this made a huge
difference. He did not have all that fluid in his system and they did
not have to give that heavy steroid boost directly into an I.V. Also,
unlike last time, they let me feed him right away, and he was starving!
He ate for much longer than he normally does. He still was upset after,
but once that Tylenol kicked in, he calmed down some and fell asleep
for a little while on his daddy. We stayed in that recovery room for
about an hour, then they moved us to another room where we waited for
about 45 minutes. We changed him and got him dressed, they took his
vitals again, did a final check, and then they said we could go! We
were shocked, but thrilled!
It is going to take a few days for him to get back to himself, but all in all, round #2 was a HUGE success and we are definitely seeing the light shining BRIGHTLY at the end of the tunnel! It just goes to show you the strong power of prayer and there is no greater gift than the love and support from family and friends…
Thank you and God Bless,
Our trip began on Monday morning, 3/21. We arrived in New York a little before 1:00 p.m. right on time for our 1:15 p.m. follow-up consultation appointment at Dr. Milton Waner’s office on Manhattan’s Upper East side. Owen was a really good boy in the car and slept for most of the trip. While in the waiting room, we talked with two other families that traveled much longer distances to see Dr. Waner (Tennessee & Florida).
When Esma (Dr. Waner’s nurse) came to take us back, Owen (rested, fed & changed) was a very happy guy. He greeted Dr. Waner and his staff with lots of smiles. Dr. Waner brought his two other colleagues into the room. One was a young male doctor who we had met before. He is training with Dr. Waner. The other doctor was a young woman, a doctor doing research, observing cases in efforts to continue building The Vascular Birthmark Institute of New York, which Dr. Waner has founded.
Dr. Waner and staff were extremely pleased with Owen’s face. They looked through his file of pictures and our book of pictures and were very happy with how far along he has come from the first time they met us. We discussed what appeared to be some scarring in 2 areas. Dr. Waner thought it could be from a few different things- the hemangioma in those areas was deeper and ulceration may have occurred if we had not treated it. Or it could even be from the steroids. It was hard to say, but he wanted to stay on top of it. He informed us of a research study they are doing on the effects steroids have on children with vascular birthmarks. Since Owen was on steroids for 3 months, he asked if we would be willing to participate in a survey and we said yes. He then examined his lip area more closely and said that it was “the most stubborn.” At surgery the next day he would focus on the the lip, the 2 deeper areas and some other small patches. We then pointed out some other areas and red marks of concern and he assured us that they were nothing to worry about. We asked about re-growth and if he thought any more hemangioma would come back at this point. He shook his head no. Hemangiomas grow rapidly from 2 to 6 months and since we attacked Owen’s so early, he is past the worst part and we are in the clear (yeah). We informed him about our frustrations with getting the proper pediatric ophthalmologist diagnosis and he agreed that we do need to seek yet a 3rd opinion in order to make a decision whether Owen needs glasses now or not. He answered a few more of our questions and then we said good-bye until the next day.
We made our way across town to the west side where we checked in at The Skyline hotel again. While waiting for our room to be ready, we walked a few blocks to have dinner at a recommended steak house, which was a bit pricey, but delicious. Owen was a little angel in the restaurant, sleeping on mommy for most of the meal. This time our room was on the hotel’s “noisy” side, so sleeping for all of us wasn’t that great, but then again, it normally isn’t the night before Owen’s procedures.
The next morning, we packed up and got ready for round #3. We arrived to the hospital around 8:15 a.m. and they called us back at 9:00 a.m. to meet with the nurses and anesthesiologist. Owen’s surgery was scheduled for 9:30 a.m. However, Dr. Waner’s first case had some complications, so we had to wait longer than usually back in the pre-op area. Despite being hungry and tired, our little buddy did wonderful while waiting- he was very calm and never made a sound the entire time. Mommy and daddy cuddled and walked around with him. They finally came back in to take him around 11:00 a.m. We got a quick picture with Owen and Dr. Waner (our hero) and the doctor said, “can I take him?” and we said yes. We watched as he carried off our handsome little man through the big glass doors down the hall to the surgery room. Although we know that Owen is in the best hands possible, it still stings terribly to watch him get carried off. We made our way back to the waiting area where we anxiously waited with “Jo Jo” (Owen’s grandmom) for Dr. Waner to come get us. About 20 minutes later, he came walking down the corridor nodding that things went well (wheeh- sigh of relief) but that Owen was pretty upset (could not wait to get to him). He led us to the same recovery area as the 2nd surgery. On our way, he informs us that he thinks Owen may need one more surgery after this (ulgh- a bit of disappointment sets in). He said the hemangioma on his lip is still very thick and that he may need to work on it some more. He also wants to make sure that those 2 deeper areas heal completely. We need to send him pictures in about 3 weeks and he will make a decision on when we should schedule the next treatment.
When we arrive in recovery, Owen was crying hard and there were lots of people crowded around him. They let us in and mommy picked him up right away to try and soothe him. He responded well to being nursed, but was still sobbing and crying while he ate. Finally he calmed down some and we are able to take off his monitor cords and change him out of his hospital gown. “All done, all over- you are the best boy…let’s go home now…” We were discharged about a half hour later. He will spend the next couple days recovering and he will be back to himself just in time to see what special treats the Easter bunny brings.
We are so proud of Owen. He is now 7 months old and has battled his hemangioma since birth, seen numerous doctors, taken yucky medicines, and healed really well from several surgical procedures. We feel extremely fortunate to have attacked his condition at such an early age, had so much success with his treatments so far, and that he was able to be cured. We have met so many amazing people throughout our journey. On this most recent trip, we met a beautiful young woman named Samantha. Samantha is 29 years old and has been battling her facial hemangiomas since birth. Her and her family finally found Dr. Waner who has agreed to help treat her and change her life forever.
We pray that development, education and research continues for years to come so others who are faced with vascular birthmarks find the correct information and treatment needed. We continuously try to support families who are just navigating a vascular birthmark for the first time, or those who are much farther along in their journeys.
Thanks again and love to all- Jan, Andrew and Owen xoxo
Since this was the 4th time around, we felt a bit more prepared and ready for our trip. We left around 8:00 p.m. on Wednesday, June 22, 2005 and arrived in the city by 10:00 p.m. (made great time). Owen slept the whole way and awoke when we pulled up to the Belvedere Hotel. Our regular hotel (The Skyline) was booked so we had to make reservations at this other hotel a few blocks away. Although pricey, it was very nice and very clean. After getting settled in our room, we all decided to go to sleep- mommy, daddy, “Grand Jo/Jo Jo” (Owen’s grandmom) and Owen.
Our wake up call got everyone moving around 5:30 a.m. Owen woke up pretty cranky wanting to eat. However, we were able to hold him off and he fell back asleep until we were ready to leave around 7:00 a.m. We arrived to the hospital by 7:15 a.m.- “Here we are again, hope this is it.” We met two other families in the waiting room. Both had little girls with facial hemangiomas. We talked and shared stories- what they were told by different doctors, how they found Dr. Waner, the battles with their insurance companies, etc. It is amazing how some stories are so similar, how much you learn from one another, and the bond that you have with these parents who are also on the same road to fight and help cure their children from this condition.
Dr. Waner was running behind, so when he came to greet us, we were all very anxious to get started. Owen was next so we were instructed to go back to the pre-op area to get him changed and ready. Owen was “humming” and “singing” softly while mommy and daddy walked around with him. The guilt hits us hard while watching Owen all happy and smiling and thinking that he has no idea what is about to happen next. We only had to wait about 15 minutes in the pre-op area (shortest wait time yet), and Dr. Waner came in to get him. We talked about the lip area and he said with confidence, “I’ll get it.” Since Owen went right to him, we let Dr. Waner carry him back through the big glass doors to the operating room again. We walked nervously went back to the waiting room. Less than a ½ hour later, Dr. Waner came to get us and said that everything went well. He feels strongly that the 2 areas of scarring will flatten and lighten over time. The lip will take the longest to heal, but this should be it. We should email him some pictures in about 5-6 weeks so he can check out the results of this last treatment. He advised us that at this point “nature will also take its course” and we are in the clear as far as any rebound growth is concerned. We also discussed our insurance and appeals.
The anesthesiologist carries out Owen, who is crying very loudly. She finally hands him over and mommy is able to calm and nurse him. He does not want to stay still to get his temperature taken or keep his pulse monitor on. His takes frequent breaks to cry while eating since his lip is so sore (mommy’s heart breaks while this happens). Daddy stays right by our side. Dr. Waner checks back to make sure Owen is ok and talks to the nurse about discharge instructions. About 25 minutes later, we are able to change and dress Owen to go home (yeah).
Years from now, when Owen is old enough to understand, we will be able to read him these stories and show him lots of pictures. All because he won’t be able to remember any of this-…another thing to be so thankful for.
We are getting ready to plan Owen’s first birthday celebration…my
what a year it has been!
Well…here we go again. We spoke too soon when we thought it was over. After emailing Dr. Waner in late August (approx. 8 weeks post-op #4), we were disappointed to learn that he thought Owen needed additional treatment. His office responded immediately to inform us that Owen’s lip was not making the progress that it should and nature did not seem to be taking its course in healing the remaining hemangioma (usually between 10-12 months, hemangiomas may start to involute “disappear” on their own). So we scheduled Owen’s 5th surgery for Wed. 10/12/05, but this time we would meet Dr. Waner at Beth Israel Hospital on the east side of town instead of St. Luke’s Roosevelt Hospital on the west side where the previous surgeries had taken place. Dr. Waner and his team thought it was necessary to “take care of business” ASAP. Since timing is so critical in the growth of hemagiomas as well as the timing in the healing process, he prefers to operate at the earliest age possible. We were lucky to get on his schedule so quickly.
Being that Owen’s surgery was scheduled for 11:30 a.m., we decided to drive up to Manhattan early that morning, rather than stay over the night before. It was almost as if Owen knew what was going on, because he awoke right at 5 a.m.- just in time for our departure and also for me to give him some milk before the cut-off period (no food or drink 6 hours prior to surgery). It was not a fun drive- the weather was awful and as a result, so was traffic. Luckily, Owen was still sleepy and dozed on and off while we made our way through the heavy rain. Jo Jo entertained him in the back, while daddy drove with mommy up front.
We pulled up to the hospital around 8:30 a.m. and managed to park and get inside despite the torrential downpours. The hospital was a lot different and not as big. We proceeded to surgical check-in where we would wait for a good while. During this time, we got to meet Dr. Waner’s other patients and their families. A little boy Jesse (5 months old) and his mom from Illinois, a little girl Abby (approx. 22 months old) and her mom from Georgia, parents of a 2 year old boy who was already in surgery from South Dakota, and Owen’s favorite- Savannah, (9 year old girl) and her mom from Georgia. She bought Owen a little giraffe stuffed animal from the gift shop and all he could do was smile and laugh at her. Our short commute to NYC was nothing after hearing about travel stories from these other families.
Still very sleepy and hungry/thirsty, we were able to occupy Owen with toys, walks in his stroller, and rocking on our shoulders. He was starting to get fidgety when we were called back around 11:15 a.m. Dr. Waner was right on schedule. He asked if he could borrow Owen’s photo scrapbook that we put together so he could show his staff. Since Owen is in a funny stage right now with going to strangers (especially when already tired & fussy), mommy decided that it would be best if I walked him into the operating room as opposed to handing him off to one of the doctors or nurses like previous surgeries. I just couldn’t bear to see him cry as they took them away. So I got dressed in the cap/scrubs the nurse handed to me and we both said good-bye to Daddy. Poor “O” was looking all around, like where am I, where are you taking me mommy? We got into the operating room where we met Dr. Waner, his assistant, 2 nurses, and the anesthesiologist. I laid Owen on the table and started to sing in his ear while they placed the mask around his face and held him down as he fought them off. I don’t know who was more upset- me or him. After about 2 minutes (which felt like 20), he was out and a nurse walked me out to meet Daddy in the waiting area.
We could hear Owen’s cry through the big glass door that led to the Pediatric Intensive Care Unit recovery area. We immediately went to the window to get someone’s attention to let us in. We literally ran over to Owen and tried to calm him down. He was very upset and also very mad at anyone besides mommy & daddy who tried touching him- he kept swatting at the nurses and trying to rip the monitor cord that was attached to his toe. We were discharged about an hour or so later and started to make our way back home through the miserable rain.
Although this whole process has now become somewhat routine, we so strongly agree with Dr. Waner’s philosophy to operate as young as possible. Owen is now 14 months old- he is more aware, and doesn’t understand why he can’t eat or drink, or why he wakes up to strange people around him and things plugged up to him.
Dr. Waner wants us to contact him in about 3 months. If the lip still (yet again) remains the same, the final alternative solution is to use a more advanced laser device called a YAG laser. The YAG penetrates even more deeper into the tissue. Dr. Waner uses this as a last resort because there is a higher risk of scarring with this machine. However, he assured us that it takes a lot of skill and he has had lots of experience using it, with great results. “The YAG will definitely clear it for good,” Waner says.
Owen’s lip is pretty swollen; he has been a little fussy, sleeping a lot and does not like things touching his face or lip (as expected). But he is hanging in there pretty tough. So, after the holidays, we will see how things look and take it from there. We don’t know if this is the end, but we do know that we have one of the most, bravest, strongest, and handsomest little fellows in the world.
Thank you to everyone who has followed our story this far and for your
concern & love,