David Jeffery Seveland

    Hi my name is David Jeffery Seveland.  I was born on 8-25-06 and was 8 lbs.  I was actually a preemie at almost 5 weeks early.  All was great though.  I was born with a Port Wine Stain that covers 95% of my body from the shoulders down.  My whole body was dark purple.  I also had a condition called Acrocyanosis (where my hands and feet had an over exaggeration to the heat or cold).  They were bluer than my body was.  The doctors were very scared and thought that I suffered from an oxygen deficiency.  Well, after seeing several pediatricians, in the first 24 hours, my parents were told that I had a Port Wine Stain and it was overall harmless.  This was good news.  Everything else was great and I got to go home after the normal 48 hours.

    Over the next week I had really bad jaundice and my parents had to do a lot of trips to the hospital to get bloodwork done and I spent my days on a Bili-Blanket.  (UV lights that were like a heating pad and inserted under my clothes.  The lights helped reduce my jaundice levels.)  The levels got back to normal about 1 week later.  Mom and Dad thought everything was going to get easy from this point on.  Boy were they in for a surprise.

     We were referred to a Dermatologist for the Port Wine Stain.  She is great.  She explained everything to my parents that they need to know.  She warned them about things that could happen just because of the birthmark.  She also told them that there is no way it will fade on it's own.  As I hit puberty it will start to get darker and it will be purple by the time I reach 20.  The only way to remove it is with Laser Surgery.

    At 10 days old my dad noticed a lump on my chest.  When they showed the pediatrician she said it was most likely a fatty Cyst.  Well they did an Ultrasound(U/S) on September 13, 2006 and found out it was a Hemangioma.  This was handled good.  Mom and dad watched me grow and my big sister, Hannah, loved me to peices.  At about 2 and 1/2 months old my mom noticed my feet were 2 different sizes.  She was playing with them and they just looked different.  She contacted my doctors and they told her to bring me in on November 7, 2006.  When they measured me the doctor told my mom that I had a condition called Hemihypertrophy.  The entire Left Side of my body measured larger than my right.  As a result of this finding we were sent to see a Geneticist on November 10,2006.  

    The geneticist looked me over and talked to my parents about certain findings.  She told my parents that I have something known as "Klippel-Trenaunay Syndrome"(KTS).  This is what is supposed to be causing my Port Wine Stain and my Hemihypertrophy.  They feel very confident with their diagnosis and assure my parents regularly that I have KTS.  They also mentioned the possibility of other Syndromes that could be causing things.  These other syndromes could work in connection with KTS.  They are Beckwith-Wiedemann Syndrome, Proteus Syndrome, Cutis Marmorata Talengiectatica Congenita (CMTC), and Sturge Weber Syndrome.  We were told that it is unlikely that I have Sturge Weber Syndrome b/c there is no birthmark present on my head or face.  We were also told that it is unlikely that I have Beckwith-Wiedemann Syndrome b/c I don't have and enlarged tongue or Earpits.  There are other things that point to Beckwith Wiedemann so they are monitoring for that.  I fit with Proteus Syndrome and CMTC about 70% so they are also monitoring for them.  It can take several years for these conditions to be properly identified since it is unknown what gene they are located on.

    After all this I got a second Hemangioma on the back of my neck.  It appeared at about 3 months of age.  I had my first MRI at 3 1/2 months old and handled it like a big boy.  I also found out that we need to get an Ultrasound and AFP levels tested every 3 months to check for cancers due to the Hemihypertrophy.  Both Hemangiomas began to shrink about 1 yr and all is well on that front.

    As things progressed we saw several more doctors and things began to slow down.  I was cleared from a Cardiologist and a Neurosurgeon.  It was recommended that I get a Neurologist b/c the left side of my brain is slightly larger than the right and I have a small venous angioma on the right frontal lobe.  This puts me at a higher risk for seizures.  The Opthamologist said my eyes are great.  The Urologist said that I was doing great but he diagnosed me with Hydronephrosis of the left kidney.  This is a kidney condition where the urine backs up into the kidney and doesn't drain.  Fortunately, I haven't had any issues as a result of that.

    Things maintained for a while and then about 15 months I began to have some more minor issues.  Around Thanksgiving 07, I had a lump show up on my lower back which has been described as a lipoma (an overgrowth of tissue).  I also had some mild seizures start in December 07, with unexplained fevers.  From what mom noticed I had about 15 seizures but that was only what she caught.  They were very mild and didn't appear to cause any problems.  However, I lost all speech not long after.  Nobody put it together.  We were told that the seizures were most likely pain induced because I got 8 teeth in 6wks.  That's also why everyone thought I stopped talking.  My teeth on the left are bigger than the teeth on the right.  The seizures stopped in january sometime and my fevers continued until march.

    In the meantime a lump showed up on the right side of my neck right at the jawline.  The doctors thought it was a Lymph gland and nothing more.  It was removed in June 08 and then we found out it was a lymphatic malformation most likely associated with one of the syndromes I am being watched for.  This malformation does put Sturge Weber Syndrome back on the list.

    We have also had 2 doctors tell us that I don't have KTS.  But on the same note they also say that the lymphatic malformation supports the previous diagnosis of KTS.  Sounds like they know as much as we do.

    I still don't like doctors very much but aside from that things are great.  We are getting the testing regularly and nothing negative has shown up so YEAH.  I have had a rough 2 years but am a very strong little boy and have been through it all with a smile on my face.  Thanks for taking the time to read my story and I hope you find this site full of information to help you understand more.