Microcephaly

[Plantlady28]

My 11 week old son has just been diagnosed with microcephaly. No issues came up during my pregnancy or at his birth. His head just stopped growing and was picked up at his routine 8 week check up.
I’m struggling to take it all in. You wouldn’t notice there is anything wrong with him. He’s smiling, sleeping/feeding well, batting toys, kicking legs etc. In the middle of having tests to see what’s caused his small head. I’m feeling very anxious about what the future may hold. The doctor said he may have no issues or have developmental issues down the line. He is my second child, and I feel more anxious that I did with my first.
Would be great to get some advice or info from other parents who have gone/going through this.

I'm currently going through the same. Our 7 month old just had the same diagnosis. We're waiting for mri and ct head to establish the cause of her microcephaly. Her head was on the 0.4th centile from birth but slowed down a bit and is now below the curve :-(
Developmentally she's doing great and she is generally on the small side...so i am really hoping she just has a small head.
I am very anxious though

That’s great that she’s hitting all her milestones. Do you think her small head is noticeable? I don’t think we would have noticed our sons small head without the doctors mentioning it to us.

I did notice that it is smaller than p other babies heads but she does not look syndromic.
The MRI scan is on Monday. I hope she manages to hold still and we will find out whether there is anything wring with her brain. Then CT scan in the beginning of October.
It's my first baby so I don't have anything to compare against.
I did a bit if literature research qt it seems that babies with a HC of -2 to -3 below SD of the mean HC have quite good outcomes, whereas when the head is more than 3 standard deviations below the mean there are problems in most kids.
My daughter's head would be -2.7 at the moment. So quite small but not a severe microcephaly.
I guess we just have to hope she keeps developing OK. Her weight is on the 9th centile and length is 25th. So she's generally not huge.

How big is your son's head? Is he generally small?
Is your or the father's head small?

Sorry for typos....writing from phone and in a hurry

Sending you all the positive vibes for the MRI and CT scan, let me know how they go. Did you have genetic testing?
His head is just below the 0.4 percentile so similar to your little girl. He is average on length and weight, just his head is small. My head is average size and my partner has quite a big head. My mum told me recently that her head is really small and she wears child size glasses, so I’m really hoping it’s something he’s picked up from her. His head does look diddy but it doesn’t look out of proportion to the rest of his body. If your little one is generally small then maybe she just has a small head and it’s nothing to worry about, fingers crossed.
Did you have a straight forward pregnancy and birth?

Yes. Pregnancy was straightforward. The only abnormality was that she was a breech baby and I had a planned c section at 39 weeks.
Her head was always on the 0.4th centile and just dropped off it a few weeks ago. I am wondering whether it might be a general stalling in her growth. When it started I went back to work, stopped breastfeeding and she started nursery and had 2 colds since. She hated the bottle initially so didn't put any weight on for over a month. Her head seems to have accelerrated i growth again in the past 2 weeks but still below the line but growing again.
Is your little one developing ok? I guess it's hard to say at 11 weeks when they don't really do much yet...

That all sounds positive. So they weren’t concerned about her head being on the 0.4 percentile until now, that must be positive too? Sounds like they are checking everything out as a precaution? Is she hitting all her milestones like sitting up etc?
He’s our 2nd child and seems to be developing the same as his big brother. Holding his head up, smiling, following toys and making cooing noises. He’s very strong on his legs and pushes on them into a standing position when we hold him upright.

All those colds from nursery take me back to my first son. He picked up everything!

How did it go yesterday?

Hello :-)
She did really well. It was a bedtime scan so we had to keep her awake all day and then she got a dose of melatonin to make her more sleepy. She slept through the whole scan. Don't know results yet

What a good girl. I bet you were very proud of her, sounds like she’s did amazing. Fingers crossed for the best possible outcome of results. My son his his cranium ultrasound early October. Did your daughter have one of these?

No. I think she's too old for one now. She will have a CT head scan next.
She is trying to pull to stand now, so defo developing ;-)

How is your little one?

That is brilliant! Seeing those milestones must be really reassuring. I’m feeling nervous about all these things hoping he hits them ok, fingers crossed.
He’s doing great, he’s a really chilled baby and goes with the flow. Seems happy enough but just nervous about what’s to come.

When should you get the results from the mri?

Hi. They say it gets reported within a few days, so I hope we will get some info in the next week or so. Really anxious about it to be honest.
How are you feeling about your little one?
How often does he get measured?
I just do it myself now. The neurosurgeon said to measure every 2 weeks and see uf that little head grows. I'm a medical professional so I guess she trusts me in my measurements 🤔
It's funny though. My medic mind is totally switched off when around my baby and when something is wrong with her and I'm just mom :-)

I’m feeling okay, but I have good days and bad days. The anxiety kicks in sometimes and I can’t stop googling
He got measured with the paediatrician a couple of weeks ago, not sure when they’ll next do it. I’m trying to avoid doing it myself, I’ll worry more and obsess over the graph in the red book! My partner did it the other day and he said it looks like it’s grown about half cm. He’s putting weight on really well and growing in length, and I wouldn’t say his head looks out of proportion yet.
That must be hard having that as a profession too, but at the end of the day you’re human and this is your baby. Is she still off the graph on the percentiles?

Hello, sorry for late reply . I am currently working nights and am a bit broken.
Yes, she's still slightly below the graph but growing. She now started babbling properly. It's super cute.
We had the CT scan last week and have a telephone appointment with the neurosurgeon tomorrow. I'm very anxious. Fingers crossed for good news
So your little one's head is growing. That's good. I totally understand your red book obsession. I am notoriously bad for it, too.
We're mothers after all. We worry.

Good luck with the appointment @Felinewoman

All her scans are normal. She just had a small head.
Best possible news. She will habe a community paeds follow up in a few months to check development but so far she's doing great. Phew

What a relief! I’m so happy for you, I bet you feel like a massive weight has been lifted.

We’ve got our cranial ultrasound in the morning. Genetic test came back with no abnormalities.

Hi there hope you don't mind me joining in, I've been watching the Post deciding whether to post or not. Firstly I'm so glad you're little one is fine what a relief!
I'm starting to go through kind of the same situation, my little boys head seems to have just stopped growing in the last couple of month and is heading towards the 2nd percentile. He's never had a big head he was tracking along the 9th and he was 4 weeks early. We have our first xray on Friday and I'm so anxious about what it all means. I too obsess over the red book I've just been watching it fall and its awful, then I feel selfish because I think whatever will be will be why am I being so obsessed and upset about what is to come? Anyway they are looking for craniosynostosis in the first instance then I guess it will be the microcephaly that comes after that if no reason is found. Its such an awful time. I hope you're both keeping well and you're little one's are okay x

Nice to have somebody else joining the chat
Had my sons cranium ultrasound today. They said his ventricles are larger than they would like, but the sonography wasn’t particular helpful and didn’t explain much too much, which is really frustrating. Just got to wait to hear back from the paediatrician when the results have been sent to her. I imagine he will need an MRI next. The worry is just never ending!

Sounds like your baby boy is still on track on the graph so hopefully it’s nothing to cause concern. Anything to do with the brain is so scary. Let us know how his x-ray goes?

And I also feel exactly the same as you, obsessing one minute then pulling myself together and thinking he’s happy that’s all that matters

@plantlady28
I hope someone will explain the results to you soon! It so annoying to get a bit of the story but without proper explanation. I keep my fingers crossed for a good outcome.

@Jaim23 welcome to the chat. How old is your little one? I guess a slow down in growth can be normal, it just gets worrying if there are not many lines to drop anyway :-/ if he was on the 50th and dropped to 43rd centile you probably wouldn't worry.
Is ye overall small?

Good luck to you both!
I am very relieved about our good results. There's obviously still a chance of her slowing down developmentally but so far there is no concern at all.

Hi ladies thank you so much for letting me join the chat and being supportive.

Really sorry I don't know how to tag your names.

Plant lady, so sorry to hear you haven't yet got any answers you'd think that in this day and age things would move quicker, the time between appointments feel so long. I guess now you've got more questions running around in your head. I think the hardest part of anything is uncertainty. I keep saying to myself what I would advise you just enjoy him here and now and cherish the moment and what will be will be, but it's not that simple is it, I know haha.

Feline woman,

Your little girl sounds happy and beautiful, I guess the only thing to do now is enjoy everyday and don't let the future even enter into it. It sounds like she is definatley developing how she should so any obstacles arise you'll all deal with them together when the time comes.

My little boy is 8.5 months, I've known for a few months something isn't right, he developed a bit of flat head syndrome at 3 months, then he developed a ridge down the middle of his head but its prominent on some days then not on others. Then his head circumference has been the same for over 8 weeks at least just dropping down and down. His weight and height are 30th percentile and 50th. Hv said it fine and said his fontenelle had closed but that was fine. Then I took him to doctors and he basically said to cut a long story short it's most definatley not fine and he should have been seen weeks ago. So I'm a bit mad to be honest, my instincts were right. He's a very bright little cheeky chappy, but like both of you, The what if and what's going to happen anxiety kicks in.

Thank you and I will let you know about the xray, please keep me informed of both your lite ones, I've been watching the chat and thinking of you all of them the last few days xx

@Jaim23 put an @ before the person you’d like to tag.