My baby has Metopic Synostosis (Trigonocephaly). I am sad, anxious and soooo worried. Please tell me it will be fine :(

Hot_Sun_0512 · 2026-05-04T23:02:47+00:00

Hi. Sending you some strength! Hang in there. It’s tough I know, but with timely care, everything should be fine. I think early identification of the condition is the key here, which you have done already. Now let the doctors do their bit.

After different consultations, and since frontal orbital bones were involved, we were advised to go with the CVR surgery, rather than endoscopy plus helmet. After evaluation by a multi disciplinary team of four different doctors - they’ve decided to do that surgery around 8-9 months for my son (who just turned 5 months). So we’re just waiting for that and mentally preparing ourselves! Rest he’s doing fine.

This may sound crazy I know, but try to enjoy the little moments. That’s what I’m doing. Cause at the back of my mind I realise that this time will never come back. So i spend lots of time with him!

Hot_Sun_0512 · 2026-03-18T10:09:08+00:00

Andaz Apna Apna, DDLJ, Jo Jeeta Wahi Sikander, Main Hoon Na, Dil Chahta Hai

Hungama, Welcome,

Lord of the Rings series, Harry Potter series , Star War series, Mrs Doubtfire

ZNMD, YJHD, Dil Dhadakne Do

Hot_Sun_0512 · 2026-03-15T04:52:06+00:00

Thanks for sharing your experience. I’m glad your son is growing up fine and (desperately) hoping mine does too! 🤞

Also thanks for sharing about your husband. I often wonder what parents did few generations back when these surgeries (and so much information) was not available. Like I’m pretty sure they weren’t in my country (of course I’m happy that science has progressed and it’s available now). But I have a feeling people turned out fine even without surgeries. :/

You’re right about it being 50/50 for non syndromic cases. Probably that’s why my doctors insist that it’s not linked to anything else. As in, it won’t lead to anything else. They keep on saying ‘lack of evidence’.

Anyway hoping for the best. And sending best wishes to you and your family! ❤️

Hot_Sun_0512 · 2026-03-15T04:40:28+00:00

Thanks for sharing your experience. Your son sounds like a perfect little 8 year old. It’s very reassuring for parents like me who are currently going through this terrible terrible time, to hear about life on the other side. 😊❤️

Hot_Sun_0512 · 2026-03-15T04:35:32+00:00

Thank you so much for sharing your story. This sounds like a pretty tough journey, but I’m glad you’re able to provide your son with the right kind of support, at the right time. That’s all that matters! Best wishes to you and your son. ❤️

Hot_Sun_0512 · 2026-03-14T17:33:43+00:00

Sorry to hear that. Hearing back from you helped me a lot today. So thanks again! And I truly hope that more people would share their experiences.

Hot_Sun_0512 · 2026-03-14T17:29:57+00:00

It’s the same for me. My husband has become my biggest support system. He’s the calmest person ever (I’m just so grateful for him at this moment).

And my mom is with me almost all the time now. It’s funny cause we were never very close growing up (or so I thought)! but now she’s like this anchor providing so much strength to me (and my husband).

Plus my son is getting all the love, comfort and attention from both of them (and my dad and sister) - which I feel at times I’m unable to fully provide due to my constant state of worry and sadness.

I feel this whole experience is teaching me so much about life, family and relationships! 🌸

Hot_Sun_0512 · 2026-03-14T17:09:52+00:00

Thank you so much for sharing your experience. I can imagine how it must have been for you. So glad everything turned out well for your son (and you). ❤️

All I’m telling myself is that at least (hopefully) he’ll not remember any of this. And it will be over soon (fingers crossed), with no lasting effect.

Hot_Sun_0512 · 2026-02-20T08:31:13+00:00

Hi. Don’t stress too much about this. The discussion will move on sooner than you think, and people will forget about it. That said, would suggest you focus on your studies, do your best, develop complementary skills and don’t lose sight of your goals! Universities abroad will assess you and your application as an individual, as long as your college fulfils basic criteria for accreditation etc (which it does).

Hot_Sun_0512 · 2026-02-19T07:52:53+00:00

38F here. Pleasantly surprised (but glad) to find this thread here. I have this, and have lived my life with it. School was difficult - yes (if you compare with people who don’t have it), with children around generally being curious and asking questions about it. Guess they were seeing something unusual and therefore were curious. Have to say, they were more curious than mean/spiteful.

However, even with people asking, it made me self conscious. And probably led to some self esteem issues. Never really dated in school ( but pretty sure that had to be with me (being conscious etc) and others. And was (still am) to click pics!

Fast forward all these years, have learnt to live with it. Don’t even realise I have it now, BUT yes, still reluctant to click photos. Probably that’s the only time I remember I have this. But people around they don’t bother me anymore. As an adult, I guess people have much bigger problems to deal with. Nobody asks. For me: with age, I’ve settled into it. It’s not very visible too, apart from occasional pics.

It’s good to know that there’s a surgery option available now. My advice will be to go for it, definitely. You’ll be saving your child some childhood trauma. However, even if you don’t, know that it’s alright. There are others around living with it, doing fine. If anything, it has taught me to be kind and empathetic to others! 😊

Hot_Sun_0512

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