Tell Your Story
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
The day Gavin was born was completely nerve wrecking.
I went in to see my OBGYN so he could make sure everything was ready and that my blood work was good to proceed with the c-section that was scheduled the next day. He began the appointment as usual checking vitals and such. Then after he was done he said he wanted me to go over to Southwestern Medical Center to have a stress test done because my blood pressure was extremely high, 180/120, and he was concerned.
Let me explain this was not the first stress test and hospital visit during my pregnancy. I started pre-term labor at 5 months and had to have a shot weekly of estrogen to stop the pre term labor. I had to go to the hospital bi-weekly and have stress test. Anyways, I went over to the hospital and was put in a room and hooked up to the machine about 4pm. At 6pm Dr. Jones, my OBGYN doctor, came in and said he was doing the c-section in 1 hour because I failed the stress test and he was worried something was wrong with my baby. He had no idea how right he was.
So I called my family and they all came up to the hospital. I was so terrified when I went into the operating room but I had Tim, Gavin’s dad, and my mother in with me to help me through it. At 7:19pm on Dec.19, 2007 Gavin was born and they allowed Tim, Gavin’s dad, to hold him and to bring him over to me and show him to me since I wasn’t able to hold him. They then took Gavin and said his oxygen level was low. When they finished with me they took me to a room and said that I couldn’t see my son until his oxygen level came up and that the pediatrician was with him and when he was finished he would come talk to me. I will never forget when the pediatrician walked into the room and said ‘I need everyone to leave the room except the parents of Gavin’. I knew then something was wrong. He explained that my son had some sort of birthmark on his entire left side of his body but he was concerned because it had a distinctive line down the middle in it and he thought it might be something called harlequins. Harlequins is a rare disorder that can kill an infant with the amount of vascular deformity that Gavin has. Thank lord he was wrong!!!
They air transported Gavin by MediFlight to OU Children’s Hospital in Oklahoma City, OK at 11:25pm. I was allowed to hold Gavin for 15 minutes before MediFlight arrived to transport him. I was not allowed to go because I had just had the c-section but Tim and my parents said bye to me and left Lawton, OK before MediFlight ever arrived at the hospital. They were waiting at Children’s Hospital when he arrived. After 3 days I was allowed to leave and join my son at the hospital. When I got there he was the most beautiful sight I had ever seen. There were so many doctors coming in and out and they had him hooked up to an IV, heart monitor, and pulse oxygen machine. Then came Dr. Allen with OU Dermatologist. She ran some test along with a skin biopsy. She released Gavin on Christmas Day to come home. She informed us that it was not harlequins but that she thought it was CMTC. She told us we would have to come to OKC (Oklahoma City) monthly for the first couple of months because she wanted to watch him closely to make sure it was CMTC before she diagnosed him. She diagnosed Gavin with CMTC when he was 5 months-old, after she had several other doctors (19 total) look at him also and agree with her diagnosis.
When he was 2 months he quit breathing one morning and I was able to get him to breathe again. I rushed him to the hospital and they admitted him for one week and released him with a diagnosis of sleep apnea. Then he was back in the hospital with respiratory distress at 3 months. He has been admitted about 4 times for respiratory problems in the last 15 months and been on an inhaler and a nebulizer machine as needed. He also has the glaucoma in his left eye with possible optical nerve damage and tunnel vision. They are trying to control this with 3 different medications. So far we have been able to control the pressure in the left eye and to keep the numbers in range for the optical nerve to prevent the tunnel vision. They ran an EEG, CAT scan, and EKG last week and everything came back good. However we have to run these test every 4 to 6 months to make sure that overgrowth doesn’t start happening. I have to watch Gavin very closely because he also has Reynaud’s Disorder and mixed with the CMTC I have to make sure he doesn’t get too cold or too hot. When he does I have to get his body to a normal body temp of about 72 degrees to prevent a multiple of problems occurring.
What is the hardest is watching this wonderful little boy walk around and be the happiest child I have ever seen and has no clue anything is wrong with him. No matter how emotionally exhausted I get I will never stop doing whatever I can to help my son. He deserves to have a normal life just like every other child out there. I’m going to let him decide if he wants to have laser treatments to make the appearance of his disorder less noticeable when he gets older. I don’t want to do laser treatments just yet because he already has to be put to sleep every 3 months to have his eye pressure checked and last time he was put under he got pneumonia and RSV. We spent another 4 days in the hospital with him.
Vascular Birthmarks are more than just a skin appearance problem. It goes deeper than that. So many things are affected. In Gavin’s case it affects his tissue, bone, and organ growth. Anything a vein runs through on his left side of his body it can affect. So far there isn’t a significant growth issue but that could change at any time. I know that they may not find a cure for CMTC in Gavin’s lifetime but I will not quit fighting for his cause and getting his story out there. Awareness is just one of the first steps to Cure’s for vascular birthmarks. Most of all though I want to do whatever I can so parents in the future won’t have to stand before a doctor and hear “we don’t know what causes it, there is no cure, we just have to wait and watch to see what happens, it may get better in time, here is some information we collected for you, and here is a list of reported problems connected with people with your child’s disorder”. As parents when doctors say those things to us, we get so frustrated and feel helpless. Just a reminder to parents though, it’s not the doctor’s fault. In some cases, such as Gavin’s, the disorder is so rare that they don’t have enough medical facts to help us yet.
I hope Gavin’s story will encourage people to educate themselves about vascular birthmarks and what it truly means for people diagnosed with a vascular birthmark.
Ashley (Gavin’s mom)
VBF has networked over 35,000 children and adults into treatment
Tyler Salvador and his twin sister, Shaine.