Submit your story!

Your story may help others so please consider sending it into us! If you would like your family story featured on this site, please send us an email with the following information:-

• Your story saved as a text file (Word, Notepad etc).
• Your name
• Your location
• The name of the person who the story is about
• Their Date Of Birth
• A maximum of 5 photographs (300×300 pixels minimum, if possible)

Please send your emails to voghelpuk(at).gmail.com replacing (at) with the @ symbol. (We have not included our email as a link on here to minimise spam).

If you have any other queries about the site or about vein of galen malformation in general, we would be happy to help you. Please get in touch via our contact form.

The full list of family stories published on this site is available here

2017 updates

This site is not maintained as regularly as it once was, mainly due to the popularity of Facebook and the ease with which people can get in touch with other families affected by VOGM on there. (Please see the links in our sidebar on the right hand side to find out the details of the facebook group).

However, this site still does get hits and every now and again we do get new updates. Happy to say that Marlene Westvig has update us with the progress of her son Kai and the updates have been posted to his story here

We have also added a brand new family story from Klarissa Kleet about her beautiful daughter Ashley. The new story can be found here.

Thanks to all our readers and contributors.

Best regards,

The VOGM Team.

Ashley Keets Story

This gallery contains 5 photos.

Born 9th June 2015  Ashley didn’t want to leave my tummy. She was in there for 42 whole weeks when I started getting what felt like contractions. I went to the clinic (we do not have medical aid) and they … Continue reading →

Ella-May Lummis

Hi my name is Michelle Lummis. I have 4 beautiful girls, Ebony-Louise (15) Lucy-Mai (13) Annabelle (17mth) and Ella-May would be 12weeks.

It all started when I went for a routine growth scan. we were told Ella-May had an abnormal blood flow to her brain and her heart was very enlarged. We were then transferred to the princess Anne hospital, were they diagnosed VGOM. We were told it could only be treated in GOSH and that it was very serious and life threatening of left untreated, so we prepared ourselves for our trip to London and leaving life as we knew it behind. I was admitted to the EG ward and prepared for an emergency c-section a few days later.

On the 28th of October at 11.47am our beautiful brave baby girl was born. We didn’t get to see her straight away as she was taken away to be stabilised. I was recovering but managed a quick peak at how beautiful she was, as she was being baptised before her transfer to GOSH. She was doing so well and then her heart started to fail. They took her down for her 1st embolism on the 29th and I rushed over to be with her when she was brought back up to NICU. She looked well and our understanding is that surgery went well, but complicated. We are still unsure why.

As the hours ticked over she started to struggle more. Then the unthinkable happened. She had a massive bled on her brain and her out look was extremely slim. Ella-May was taken down to have a shunt fitted, but we were told she was unlikely to survive. She did and we stood by her side for the next few hours…

Ella-May took another turn for the worse, the shunt got blocked and her brain was so severely damaged, she wouldn’t wake up or live. We had to withdraw treatment. We’re so sad and loved her so much. R.I.P beautiful angel.

Happy New Year!

Happy New Year to all our readers!

Thank you for your ongoing support and for visiting us and coming back regularly. This site had 21000 views in 2012 from all over the world. We haven’t put up much new content in that time, but the site is a valuable resource for anyone seeking more information and/or support regarding VOGM.

If anyone would like to see their own story updated, or has any ideas for new directions in which to take this site to see it continue to grow, then please get in touch with us or post comment.

Wishing you and your families all the best for 2013!

The VOG team.

Update posted to Zachery Liam Vandekuyt’s Story

Zacherys parents kindly posted us an update recently. Please take the time to visit Zacherys page.

We wish Zacherys parents Krista and Rob all the happiness in the world and our sincerest congratulations on the arrival of their baby girl Eliya last year.

The VOG Team

Kyle Billy Hopper

This gallery contains 3 photos.

Kyle’s Story Born October 10th, 2010 Our names are Natalie and David we have four children Ryan, Chloe, T.J. and Kyle. We live in Seaham Co.Durham. When I was 33 weeks pregnant with our fourth child, during a normal growth … Continue reading →

Vein Of Galen Study Day – 14th December 2011

Lynn and Bob Mussard the owners and driving force behind this site were invited to attend a presentation by world reknowned VOGM expert Dr Karel Ter Brugge at the yearly meeting of the UK Centres for treatment of VOGM. Dr Edmund Jessop (medical adviser for the National Specialised Commissioning Team) kindly wrote a report of the rest of the days events and we are reposting here for all those interested:

The two UK centres for treatment of Vein of Galen malformation meet each year to discuss cases and share experience. This year Great Ormond Street hospital hosted the meeting. A particular highlight was the attendance of Dr Karel Ter Brugge, the internationally renowned expert from Toronto, who participated in the case discussions and gave a lecture.

The morning session opened with a review of all cases treated at Glasgow and London since the last meeting. Particular themes which emerged were the use and interpretation of magnetic resonance imaging (MRI), drug regimes before and after procedures, and the use of genetic tests. There is increasing evidence that a small proportion of cases of Vein of Galen malformation may be caused by a genetic mutation. If true (more research is needed) then it will be important to identify cases which are caused by a mutation because it means the disease may affect other pregnancies in the family. Even if this is true, familial cases are extremely rare, with almost all cases being sporadic.

After lunch Dr Ter Brugge gave a lecture to a packed seminar room. His talk covered all malformations of veins and arteries in the brain, not just the Vein of Galen malformation. He emphasised the difference between, on the one hand, the malformations which present in infancy or childhood, and on the other hand, those which present in adulthood. The childhood malformations have different origins and different treatments – as is often heard in children’s hospitals “Children are not just small adults!”. Dr Ter Brugge also encouraged his audience to think about what was happening in the wall of the blood vessel: for some types of malformation (not Vein of Galen) we can fix or block the abnormal flow of blood but the disease process continues in the wall itself.

The final seminar of the day reviewed a number of difficult problems in the management of Vein of Galen malformation. Again there was good discussion between the experts from Glasgow, London and Toronto.

Happy new year!

A very happy new year to all our website users from all of the team here at Vein of Galen UK. We hope you have all had a good christmas and wish you all the very best for 2012.

A quick announcement: We have finally got the new forum up and running following the poll that we ran on here a few months ago. We invite all of you that were interested in participating in forum discussion to visit: the new forum here

You will need to sign up and register to post on the new board. There is a suggestions forum where you can make any suggestions for how YOU would like to see the forum grow and develop. Although we may not be able to respond immediately, please rest assured we are listening and your input is very welcome. This site and the forum were set up to help YOU and without YOU we would not be able to continue to grow and give support to countless families around the world.

2011 was an excellent year for this website, with over 25000 visitors and an average of 2100 visitors per month. Hopefully we can continue to improve the site in 2012 and we will continue to try and ensure our site is the number one resource for information and support for this devastating condition. Having a vibrant and active user community on the forums will be another way in which we can deliver that. Please note however that if you don’t use it, it will be closed for inactivity by the owners of the forum hosting space.

Your feedback is always welcome, so please either post on the forum or send us a message through the content page on this site.

thanks!

The VOG Team

David Krause

David’s Story

Born October 31st, 2010

I was pregnant for the first time and had my third ultra-sound scan on August 27, 2010 (29th week), when my gynaecologist told me that there would be an “abnormality in my child’s brain”. I was totally devastated and very afraid. He presumed that my son had an arachnoidal cyst and so we were sent to the antenatal unit at the University Clinic in Frankfurt to have a more specific ultra-sound scan.

Support forum poll. Please vote if you use this site.

Visitors to this site who used the old site will know that there was a popular message board on there. When we moved to this site, we created a new message board but this was not used anywhere near as regularly and was unfortunately removed by the forum hosting company due to inactivity.

After thinking about this, and inspired by Kate Da Silva’s comment on the “did you know we have a forum” post. We thought we’d put it to the vote. It is you, the users of this site, that the forum would be for after all. If you want it, I will happily create a new one. If you guys think this site does the job well enough then again please vote.

We would encourage you all to please vote and welcome any comments.

Thanks very much,

The Vein Of Galen Support team