You can read more about Aaliyah here - http://www.kulr8.com/news/local/Hope-for-Aaliyah-133593793.html

He was a perfect baby, an absolute angel, but looking back now, all the signs were there that all was not well. From being a very healthy birth weight Louis soon dropped down two lines on his centile chart, and he slept most of the day. He hated to crawl but we taught him how, and he was walking at 11 months, although his balance wasn’t brilliant. He was very calm and quiet and didn’t speak, but he had ‘glue ear’ so it wasn’t surprising. By the age of two he wasn’t sleeping so much and was reaching all his milestones. However, during a visit to our GP regarding eczema, he expressed concern over Louis’ head size and the prominent veins on his forehead. When measured, his head circumference went off the top line of the centile chart. Next day we were referred to our local hospital who told us there was nothing to worry about! Life carried on as normal and Louis started school at four and a half years old.

I had known for some time that Louis had a whooshing noise inside his head which could be heard if you put your ear to his temples. Because of this I went to my GP again in March 2001, when Louis was nearly five years old, we were referred to Great Ormond Street. Eventually the diagnosis of a Vein of Galen Malformation was made in October 2001. His heart was enlarged and working very hard, but was coping well, and he had mild hydrocephalus. We were told it is amazing he hasn’t suffered any real symptoms.

Louis’ first embolisation was carried out by Prof Lasjaunias in Paris in March 2002, he had four further procedures  in Paris up until Professor Lasjaunias tragically died following a heart attack at the age of 58.  In August 2011 Louis had two more embolisations in New York under Dr Berenstein, and he has further procedures scheduled for 2012.

Louis has never experienced any real problems due to his VGM. He is in his final year at mainstream school and is doing exceptionally well academically, predicted top grades in all subjects.  He is very eloquent and well informed.  He has a great love of politics and recently did a week of work experience at The House of Commons in London, which he described as ‘the best week of his life’.  He is a young man who has been through so much in his 15 years, and we are very proud of how he copes with everything life has thrown at him.

At 20 weeks we were told that we were expecting twin boys who we named Alfie and Charlie and which we were over the moon about. At a scan at 25 weeks at my local hospital the sonographer picked up an ‘abnormality’ in one of the Alfie’s brain – we were obviously devastated and immediately started to worry about what was wrong and what the future would hold. We were referred to our local fetal medicine unit in Newcastle where we were first told of the diagnosis of Vein of Galen Malformation. It felt like a very dark day and what had already been a pregnancy fraught with difficulty just seemed to become that much harder. We were given a lot of information by the doctors but none were experts and we felt lost. We left the hospital and came home and began to do a lot of online research which probably didn’t help as although there were many positive outcomes there were also those that weren’t.

We continued to be monitored weekly not only for Vein of Galen malformation but also the Twin to Twin Transfusion which was still putting both babies life’s at risk. I was given a choice about where Alfie could be treated and came to decision that we would go to London to Great Ormond Street Hospital as we had family and friends who would be able to support us through what was to come.

I travelled to London for the first time at 32 weeks pregnant as the Twin 2 Twin transfusion had started to cause complications for the boys. I had been told by local hospital that usually they would deliver the babies at this point but Alfie’s VOG made this not a straight forward decision. I arrived at UCHL to meet a large team of doctors including Dr Stefan Brew who would discuss what was the best plan for the boys. They basically told us that if the boys were delivered at this point and Alfie was born unwell then he would have very little chance of survival. We were told they had previously operated on 5 babies born pre 36 weeks all who had died. We were given the choice as to whether deliver the boys immediately,  but we knew that the best chance of both babies surviving was to try and get my pregnancy to 36 weeks.

We travelled home on the Monday and I was to be scanned every few days. By the Thursday things had deteriorated to the point that we had already been told if it got to this stage they would have no choice but to deliver the babies. So we were sent immediately back to London and by Friday the team was ready to deliver the boys. They were born at 33 weeks gestation on 07/08/09 Alfie weighing 4lb 1 and Charlie 4lb 2. I got to hold Alfie very briefly before he was taken to intensive care at Great Ormond Street. Alfie was doing very well initially and Dr Brew had told us he would like to wait 4 weeks so that Alfie could grow and gain weight and he would remain at Great Ormond Street till they could perform the first embolization at 37 weeks. However Alfie’s health started  to deteriorate 1 week later and he started to show early signs of heart failure. This was one of the worst days of our lives because as we knew his only chance of survival was to have the embolization but history dictated that he stood a very slim chance of survival.

He was taken down to theatre at lunchtime and waiting to hear whether or not he had survived was one of the darkest moments of our lives. We cried and cried when we told he was on his way back from theatre and although he suffered a small bleed to the brain post op he defied all the odds and began to recover. Dr Brew said that he would still need further surgery as he had not managed to seal the artery but wanted wait another 6 months to allow Alfie to grow. So after 6  weeks in hospital we took our boys home.

Alfie was doing really well at home and all the doctors involved were really pleased with his progress. In January 2010 we travelled to London for his second embolization. This again went very well and Alfie was discharged from hospital within 2 days. His development was deemed as ‘normal’ and he was doing everything his brother could do and more. Following another MRI in November 2010 the team at Great Ormond Street were hopeful that they had potentially sealed the artery and he was booked in for Angiogram in January 2011 which would give an accurate answer as to whether he was ‘cured’. In February  2011 we were given the news that we have dreamed of and that the artery is totally sealed and Alfie will require no further treatment. Dr Brew has told us to go away and live our lives as normal and that hopefully Alfie will have no memory of what he has been though.

Alfie is the happiest little boy you could ever wish to meet he laughs at anything and anyone and is as mischievous as any little boy his age. We are extremely blessed that he is in our lives and we are looking forward to the future and will be eternally grateful to Dr Stefan Brew and all those involved in saving our sons life – he truly is a miracle.

He also provides the audience with background history on how he became a premiere radiologist in the United States, including a riveting story  about an early internship in Israel and the important lessons he learned there.

TEDMED is an annual event for luminaries of different fields who are interested in learning about cutting edge technology. “The greatest minds in health and medicine.”

http://thechart.blogs.cnn.com/2011/09/23/tedmed-fixing-the-brain-with-super-glue/

http://www.eveningnews24.co.uk/news/ella_grace_s_latest_surgery_is_cancelled_due_to_infection_1_1030166

http://www.edp24.co.uk/news/hopes_high_that_ella_grace_is_set_for_her_final_surgery_1_1027484

Located just a few blocks away from the excitement of Times Square is a hospital where treating VOGM has become the norm. Headed by Dr. Alejandro Berenstein, a pioneer in the field of neurointerventional radiology, the Center for Endovascular Surgery takes pride in being the most heavily referred team in the United States. What makes CES different is the sheer volume of patients they see with vein of Galen malformation. From the neurologists and cardiologists on staff to the nurses in the NICU, every patient is unique, even though the condition being treated is not.

Click here to read more about the Center for Endovascular Surgery in New York:  http://neuro.wehealny.org/endo/staff_overview.asp

Robert was born in Santa Barbara, CA on February 21, 2010, following a normal, uncomplicated pregnancy.  We had a few minor complications during delivery and he spent a few days in the NICU after he was born.  We figured we’d closed the door on the ICU, and brought little Robert home and began our journey into parenthood.  He was born with some prominent facial veins and a few “stork bites” or red birthmarks, but nothing that seemed too concerning.

Around 5 months, he developed a little bit of redness (broken capillaries) and swelling around his left eye.   We took him to the pediatrician for an evaluation, and ended up with some antibiotic eye drops, thinking it was an eye infection.  The culture came back negative, and we proceeded to keep an eye on it.  Eventually, we got a referral to a pediatric ophthalmologist, and finally to a local pediatric dermatologist.  By this point, Robert was 7 months old, and the broken capillaries were spreading across his face.  There was some suspicion that this was a vascular birthmark. While the left eye was much worse than the right, we were starting to see some redness underneath the right eye as well.

Our pediatric dermatologist referred us to another pediatric dermatologist with experience with vascular birthmarks at UCLA.  On October 8th, 2010, we met with the pediatric dermatologist at UCLA about the suspected birthmark around Robert’s eye.  She gave us a tentative diagnosis of a venous malformation, which is a vascular birthmark in the family of a hemangioma.  To confirm the diagnosis (which was worrisome enough, as venous malformations can be extremely disfiguring), and also to ensure that the malformed vessels were not interfering with Robert’s eye and/or brain, she ordered an MRI.  As part of the prep for the MRI, Robert was required to have a “pre-op” check-up, to ensure he was healthy enough for anesthesia.

At this visit, my husband, Bobby, asked our pediatrician if it was possible that this birthmark was perhaps responsible for Robert’s larger than average head circumference.  The pediatrician measured Robert’s head again, and determined that it had grown larger than it should have – and if we were not already having the MRI done for the birthmark, he’d order imaging done.

At this time, he contacted a friend of his who is a pediatric neurosurgeon at Cedars Sinai, to ensure that the images being done for the suspected birthmark would give him the necessary information regarding Robert’s head circumference.  So, on October 19th, 2010 Robert had the MRI, and we were resigned to waiting until the end of October when we had our follow up with the pediatric dermatologist to find out the results.  When she called a day and a half later with the results, I knew it couldn’t be good news.  She had the results of the MRI, which showed that the malformation was in the brain.   She and our pediatrician conferred, and agreed that we needed to meet with a pediatric neurosurgeon – and our pediatrician arranged for us to see Dr. Danielpour, his friend and mentor, the very next day in LA. We were extremely grateful that Dr. Danielpour agreed to see us on such short notice, on a day that he normally does not see patients, but also realized the gravity of the situation.

The next day, Friday, October 22nd, we met with Dr. Danielpour who explained that Robert had a Vein of Galen Malformation – essentially one of the major veins in his brain developed abnormally.  The arteries were feeding directly into the vein, without an intervening capillary bed.  The capillary bed is what slows the blood flow down; and maintains the arterial system as high pressure and the venous system as low pressure.  Without the capillaries, the venous system in Robert’s brain was high pressure – and the venous pressure was causing the prominent facial veins, the broken capillaries and swelling around his eye (e.g. what everyone had thought was a birthmark), and his larger than average head (the pressure imbalance resulted in an accumulation of CSF).  He explained that this was treatable, and one of the best, Dr. Michael Alexander, was also at Cedars Sinai.  Dr. Alexander met with us a short while later that same day, in between surgeries.  He explained that as a neuroradiological interventionist he could embolize the arteries feeding the vein of Galen malformation using coils and/or glue; and by doing this, the pressure in Robert’s brain should return to normal.

Robert had his first embolization procedure on October 27, 2010 and his second on November 12, 2010.  We began seeing improvements in the swelling and redness around his eyes.  We’d hoped that two embolizations were all that would be necessary to treat Robert’s VOGM, but a follow-up MRI in mid-December showed that at least one more procedure was required.  We cancelled a trip back east for Christmas, and Robert had his third embolization days before Christmas.   Another follow-up MRI in February showed that a fourth embolization was necessary – we scheduled this for February 24 – three days after Robert’s first birthday.

This procedure was exactly like the previous three – uneventful…until the following morning in the PICU (we always stayed one night in the PICU after his embolizations), when he threw up and was rather irritable.  As these were troubling neurological signs, he had CT scan done that morning, which came back clear – no signs of hemorrhage, and an MRI done that afternoon.  The MRI showed that Robert had suffered a tiny stroke.  We spent another two nights in the PICU, where Robert received extra fluids and was under careful observation.

This last embolization showed that there was one tiny feeder artery left, too small to embolize.  Dr. Alexander wanted us to come back for a cerebral angiogram and possible embolization three months later.  So, in June, we went back for the angiogram.  This showed that the remaining feeder was still extremely small, and we were discharged the same day with directions to have another MRI in one year…unless, of course, there were other signs indicative of an MRI.

So, where are we today?  We are hopeful that Robert has not suffered any permanent damage from the stroke.   Currently, he is delayed in walking (he’s 18 months old and not walking on his own yet – he’ll walk anywhere holding on to a hand or something else), and he may be exhibiting signs of language delay.  We are preparing to have a developmental assessment done, but have every reason to believe that with some extra help and early intervention, Robert will catch up.

Please feel free to contact me at denizmari(at)yahoo.com replacing “(at)” with “@” with any questions you might have.

There were no complications during pregnancy.  When Anna was 3 days old she had a well baby check-up with Dr. Kinnane (Pediatrician) who detected a “louder than normal” heart murmur.  Dr. Kinnane ordered a chest xray in the office to see what was going on.

After reviewing the chest xray, Dr. Kinnane very calmly instructed us to check in to the hospital because the cardiologist could see Anna on her evening rounds.  That night Dr. Battiste (Pediatric Cardiologist) looked for a long time and could not find anything wrong with Anna’s heart.  She said that she had seen this happen one other time and it had to do with an arterial-venous malformation in the brain.  The MRI was scheduled for the following morning.

Dr. Battiste was right, Anna was quickly transferred to PICU at Wesley Medical Center after the brain MRI showed a Vein of Galen Malformation, which also explained the enlargement of her heart. The team at Wesley advised us to pack our bags with enough personal items for several weeks while they finalized treatment options for Anna.   Within hours we had packed our bags and were scheduled for transport.  We  flew via Eagle Med to Phoenix, Arizona where Dr. McDougall from Barrows Neurological Institute treated Anna via embolization (glue and titanium coils to block the rapid blood flow through the aneurysm) and angiogram.  Anna had her first embolization at 6 days old and a total of 3 embolization surgeries which resulted in approximately 16 feeders being glued/coiled.  We spent 28 days in the hospital.  We went to Phoenix again when Anna was 1 year old and Dr. McDougall completed several more embolizations to decrease the blood flow to a very minimal level.

In January of 2007 when Anna was 2 1/2 years old she began having partial compex seizures. MRI and CT scans in January and February of 2007 showed no change or additional abnormality to her brain. On Anna’s 3rd birthday (9/11/07) she had a seizure that was approximately 45 minutes long, so we asked the Neurologist (Dr. Shah) to repeat the MRI just to give us comfort. This time the MRI showed a brain tumor (medulloblastoma) had grown in her cerebellum. On September 13, 2007 Dr. Dickerson fully resected the brain tumor via Craniotomy at Wesley Medical Center.

Anna then started her journey of Medulloblastoma treatment with Dr. Rosen. She completed 6 weeks of Monday-Friday radiation with full sedation and almost 1 year of intense chemotherapy.

As of September 2011 Anna is 7 years old, has had no cancer regrowth and she has had no additional complications with her Vein of Galen Malformation.

Happy News tells the story of Baby Sophia.  Her VOGM was treated with medical Krazy Glue.

http://www.happynews.com/news/12182008/doctors-use-krazy-glue-plug-hole-baby-head.htm