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Original poster

Vein of Galen Malformation - hand hold please

29 replies

NC9876543211 · 29/09/2021 12:04

And prayers please, hundreds of prayers if you are that way inclined.

I had my 20 week scan yesterday - actually was a rescan as baby was so wriggly at 20 weeks that they couldn't get all the data necessary.

Data required came back fine and sonographer said 'let's just have a check over rest of baby to make sure all ok' - of course I thought fine.

She then said she had seen something on baby's brain that didn't look quite right and brought in another sonographer as a second opinion who agreed.

I was booked in for a scan with a consultant this morning at 9am who has confirmed that likelihood that baby has vein of galen malformation - a very very rare condition, especially when diagnosed at this stage in pregnancy, and overall only 1 in 1 million chance of having the prognosis. I am that one.

It's not looking good. I have to go for an MRI on Friday morning and then will be referred to GOSH for specialist care. It is likely that even if I decide to carry on with the pregnancy it will fail due to heart failure.

I can't believe I'm fucking writing this. I don't know what to do.

OP posts:
Scirocco · 29/09/2021 13:08

Hi username redacted by MNHQ, I'm so sorry you and your baby are going through this.

It's been a while since I've done paediatric/neonatal neurology, but from what I recall the team at GOSH are one of the best in the world at what they do and have connections with specialists in virtually everything, so you'll be in good hands.

Treatment options will have developed a lot since I was studying and training, but even back then (a few years ago now!) the outcomes for children and babies with this and similar conditions from endovascular treatments were improving all the time. The treatment options will almost certainly be better now.

The changes to blood flow can put strain on a baby's heart, but again there are management options available which can help keep this under control for many babies. Again, GOSH are fantastic at managing these things.

I know it's so, so hard, but try not to give up hope. Have the MRI and speak with GOSH and see what they say. They should also have a patient information leaflet available online, so if you search GOSH and a diagnosis, the relevant leaflet should be easy to find.

I'll keep you and your baby in my thoughts and prayers. 💜

EmmaGrundyForPM · 29/09/2021 13:12

I have no advice but am thinking of you.

Orangejuicemarathoner · 29/09/2021 13:13

sending you lots of love xx

Original poster
NC9876543211 · 29/09/2021 14:09

@EmmaGrundyForPM @Orangejuicemarathoner
Thank you both for your thoughts, I appreciate it a lot.

@Scirocco thank you for that information. I am seriously hoping that there is something they can do but I fear that with a diagnosis this early in pregnancy we might be fighting a losing battle. It's so hard not to fear the worst.

It's so unfair, I can feel him wriggling about as I type, I keep thinking about my daughter kissing the bump and saying 'babbie', about how excited my DP was when he found out it was a boy 'we can go to the barbers together, I can teach him how to play golf', the clothes that I've bought, the nursery place I've reserved for him (as leaving it any longer would mean he'd miss out on a place....) - I am finding it very hard to cope right now

OP posts:
AshiSaeed · 29/09/2021 21:20

My thoughts and prayers are with you. I pray there is something they can do for this baby. Sending you love and strength xxx

Msfoxy17 · 29/09/2021 21:24

What devastating news for you, sending you a big handhold. I'm afraid I don't have any advice and its not something I've ever heard of, but my thoughts are with you.

Raindancer411 · 29/09/2021 21:36

Sending lots of thoughts your way, and it seems you are in the best hands. I have read the online info GOSH have on it and it seems more positive than anything. Trust them and keep your chin up (but I know how hard that is when in the situation yourself) xxx

Vebrithien · 29/09/2021 21:40

I will keep you both in my prayers.

Original poster
NC9876543211 · 30/09/2021 11:19

Thanks all

I had the MRI this morning - they brought it forward - it was horrid as all MRI scans are, but even more so because I could feel him wriggling around in there.

The professor who is going to be doing the report said that ultimately he was going to be checking for brain injury caused by the mass (it's inevitable that there would be some displacement but not necessarily injury) and he'd get the report back to my hospital by tomorrow lunchtime at the latest, and then that will determine what direction the conversation with GOSH takes when I speak with them.

There's nothing I can do apart from hope and pray that there isn't any injury and we can continue with the pregnancy and then deal with it once he is born with embolisms as necessary.

What a nightmare. It doesn't seem real.

Thank you all for your thoughts.

OP posts:
Lougle · 30/09/2021 12:31

I'm so sorry that you're facing this. I did a quick Google and a hospital in Boston are doing some research into fetal surgery for VOGM. It might be worth making contact, as it's so rare?

www.childrenshospital.org/conditions-and-treatments/conditions/v/vein-of-galen

Original poster
NC9876543211 · 30/09/2021 13:20

Thank you. And thanks so much for that link. After all the googling I have done over the past 24 hours I hadn't come across that.
I think I'll wait for the report and prognosis from the professor and team at GOSH and then contact them, or mention it to the team when I meet with them. But I am really grateful that you shared that with me.

OP posts:
Lougle · 30/09/2021 13:25

I'm sure you've come across it, but there is a specific support group for VOGM vogm.org/

SparkyBlue · 30/09/2021 13:34

Absolutely no advice OP but I'm thinking of you and I wish you the very best

Original poster
NC9876543211 · 30/09/2021 15:38

Thank you again @Lougle I will also look into that.

And thanks again everyone for your thoughts.

OP posts:
Vebrithien · 01/10/2021 07:27

Sending prayers and hugs your way for today

Nomoreusernames1244 · 01/10/2021 07:37

I'm so sorry that you're facing this. I did a quick Google and a hospital in Boston are doing some research into fetal surgery for VOGM. It might be worth making contact, as it's so rare?

Honestly the specialists in this condition will already be in contact. Sharing notes, publishing outcomes, getting together at conferences and probably visiting and working together too.

Like you say, it is so rare anyone working on it will know everyone else, it will be a very small world.

Please bear in mind there is a difference in US and UK medicine too. US medicine is driven by profit and they are more likely to risk intervention and medicalisation. Your nhs team doesn’t have the financial pressure and will consider all options, and sometimes the best course of action is to watch and wait. However if intervention is needed they will support that, regardless of cost.

Discuss with your team, but they will speak to the is team if necessary.

Good luck.

MrsElijahMikaelson1 · 01/10/2021 07:43
Flowers
rosed1008 · 01/10/2021 15:00

I really hope you get some answers. The not knowing/limbo is the most awful isnt it.

Good luck, we are all rooting for you.

Original poster
NC9876543211 · 01/10/2021 18:22

Hi all

We had the report back from the MRI today which stated that at the moment there is no brain injury, however there is a swelling/clot on one of the feeder veins which may become a problem and cause injury.

So next step is referral to UCL/GOSH, followed by another MRI in 3 or 4 weeks to check on the clot and see if it's having any impact on the brain.

So still a waiting game.... it's terrible not knowing.

Will update when I have more info, if only to help anyone in the future that needs this information for their own children

OP posts:
EmmaGrundyForPM · 01/10/2021 19:44

I am so sorry, OP.

Thinking of you

Original poster
NC9876543211 · 15/10/2021 14:30

Hi all

In way of a very sad update I wanted to let you know that on expert advice we are having a TFMR next week at 25 weeks pregnant.

@MNHQ please can you include a trigger warning in the title and/or move this to a more appropriate board

Thanks

OP posts:
SparkyBlue · 15/10/2021 19:22

OP I so sorry to read your update.

Chardonnay73 · 15/10/2021 19:25

This is heartbreaking. I have experience of similar. All my love to you and yours x

Chardonnay73 · 15/10/2021 19:28

And I know it doesn’t feel it right now, but you will smile again… one day x

MrsIronfoundersson · 15/10/2021 19:31

I am so sorry NC, love and best wishes to you.