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 guess there's not much I can do anyway. She will develop at her own pace but I worry nevertheless.
Funny that our two have the same birthday :-) happy 3/4 birthday to yours!

Also, friends of mine have a little daughter who only started crawling at one year...and she's totally fine.
I guess every baby is different.
I am just paranoid because she has a small head.😕

Yeah I'm paranoid too, I say don't worry but all I do is worry haha. It doesn't help though so don't know why I do. I know didn't realise they were exact same age. Mine has a cold at min snot every where the joys 🤦‍♀️🤣. But by the sounds of your little girl, she sounds completely fine. All I can say is just try to enjoy her while shes so tiny, I keep thinking I'm gunna regret all this time spent anxious when I should just be enjoying the little time they have as babies. Easier said than done though xx

Yeah I'm paranoid too, I say don't worry but all I do is worry haha. It doesn't help though so don't know why I do. I know didn't realise they were exact same age. Mine has a cold at min snot every where the joys 🤦‍♀️🤣. But by the sounds of your little girl, she sounds completely fine. All I can say is just try to enjoy her while shes so tiny, I keep thinking I'm gunna regret all this time spent anxious when I should just be enjoying the little time they have as babies. Easier said than done though xx

I know. She is amazing. Just a happy baby. Now I noticed hand flapping...,🙄....my partner says I should just relax and she's a baby and they do all sorts of things and he's probably right.
Our outpatient paeds appointment was cancelled because they think there's no need as she's developmentally totally fine 😁
Re cold: ours had bronchiolitis two months ago (that's when the whole head thing started) and is still coughing and snotty. I can't wait till spring ...

Oh my lad hand flaps all time I'm not concerned about that at min though as I think a lot of babies do it so young. But I did think kind of same thing when I noticed it haha. 🤦‍♀️Oh gosh that must have been awful he had really bad reflux until like 6 month old that was awful. It's good they think they don't need to see her right now. Our appointments not till November I'm sending other half in don't think I can deal with it to be honest. I've actually gone on some mild anxiety tablets to try and calm me down a bit. I'm just trying to think what will be will be and I'll face it when it comes. You sound like a great mum just go easy and don't make yourself ill with worrying, I did its not good for anyone.

@Jaim23 did you have your appointment yet? How did it go?
Dd is 10 months old now. Crazy!
She's about to crawl and is trying to cruise on furniture which ends in a lot of frustration and tears 🤣
Her head is still tiny but growing...slowly...almost back on the 0.4th centile after her drop a few months back.

Hi @Felinewoman,

O ly just seen this as I didn't get a notification. Bless you thank you for remembering. It actually went really well, his head has stayed on the 2nd percentile so if it stays on that then they are not diagnosing microcephaly so they are just still monitering. Aw my goodness she sounds like she's coming on leaps and bounds, I know 10 months where has the time gone??? I hope you've all settled a bit now and just enjoying how amazing she is. Fantastic news that she's shown some growth. Bet other can't even tell she has a little head really, my sons is only a few mm in front of yours really and even though I notice it's small nobody else does really. How are you feeling about it all? Has your anxiety settled? Xx

How is everyone doing?
@Jaim23 can't believe our babies are almost a year old!
My little one is doing fine. She's now crawling all over the place and likes to walk when I hold her hands. Doesn't say any words yet but she's growing up with 3 languages so will probably be a bit slow on that front anyway. She tries to feed herself with a spoon and still hates the sippy cup. Head is still tiny but growing. Calculated on 1st centile.
Can't help it but I'm still worrying... Lockdown not helping.

I have no experience of microcephaly, although did have growth scans during pregnancy as there was a small risk I'd been exposed to Zika Virus on the trip we were on when we came away with the small stowaway. Ironically, he has an enormous head, more or less off the scale the other way.

But @Felinewoman DS wasn't crawling etc at that age. He's been behind on everything for gross motor including rolling etc, in part perhaps as he's a big chunk. I wasn't worried, and now with hindsight, we joke that we were lucky to have more time without a mobile baby as it's all so much harder when they are. And not all babies crawl before they walk etc.

Can you ring HV or ask for a check up with Paediatrician?

Oh @Felinewoman please ignore my post, I missed page 3

No worries. The munchkin is now very speedy and does an impressive downward dog.... Also walking with a bit of assistance.
She doesn't point or wave yet but loves to clap... I guess they all just develop at their own pace.
Mobile baby is definitely happier baby. I think she just didn't like being a little larva.

How are all your little ones now?
I have a baby girl, height on 2nd centile, head just on 2nd centile and weight just touching 9th centile. But she was born at 37 weeks so measurements should be adjusted slightly.
Feeling very anxious

Hi Leah. Has your LO ben flagged by a HCP for microcephaly?
My dd is now 16yrs old. Her head was small- below 2nd centile at birth. Her weight was above 2nd centile, so not out of proportion. As her HC and weight were around 9th centile at 8 weeks, no firther measurements were taken, and in fact later on somebody looked at the chart and said the measurement was probably an error (I don’t think so!)
While there can be a few different problems that are picked up by HC measurements, Babies can also have small heads.
Fingers crossed for you, and for the other parents and babies on this thread that they keep meeting milestones and being a delight to you.

Hi,

My daughter is doing well. Quite on track milestone wise. A bit slow with language but GP wasn't concerned as we speak 3 languages at home.
Her head is around 1st-2nd centile now, so still "microcephalic".
Microcephaly is a head more than 2SDs below the mean or smaller than 2nd centile. Your baby is therefore not microcephalic.

Leah my DD was born symetrically under the 0.4th. She did not thrive at all. She stayed under the 0.4th with her head falling below the 0.2 and sometimes way below. This was picked up very fast and she was moved from her birth hospital to care under BCH for lots of extra tests and speciliast help to devise an uber high calory supplement. She literally looked like a tiny elfin skeleton covered in bruised skin from so many tests and it was very, very scary. Occaionally Peads would worry she had microcephaly . Mostly they worried she had Silver Russell and very rare metabolic problems. Turns out she is just increadibly petite. She stayed under the 0.4th. She does have complex SpLD's but those come from a mix of IUGR and severe failure to thrive rather than her teeny head.
The centile charts help HV and similar pick up on the few babies who really are having a tough time or who might have a medical issue or extra needs. If you are concerned speak to your GP or HV and hope all goes well for you and your little girl. She may simply be a slightly smaller but still healthy and happy baby.

Thank you for all your replies. I had torch screens and mri while pregnant, all were normal. I couldn’t bring myself to have an amniocentesis as I was scared of miscarriage.
I’m just very anxious as she’s very small all over and her head is on the second centile towards corrected age but 0.4th centile for age she was born. Therefore I’m not sure which I should be following?

You need to discuss your concerns with a health care professional.
They should be able to make a decision about whether it is a cause for concern or not. You have seen cases on this thread where babies have been right down the bottom of the chart and just small, and cases where there are other issues going on. health care professionals can examine her in person and have the benefit of your notes and years of experience.
Do call your gp surgery.

Hey ladies, how are your small headed babies doing?
I just started googling microcephaly again. We were admitted o. Saturday after a febrile seizure and the whole gead thing came up again. The pawdiatrician was asking us about genetic testing. Her head is now more towards 2nd rather than 0.4th centile, so growing. She's hitting milestones but doesn't speak yet. But 3 languages at home... So might be just that.
I hatw it that everything always comes back to this diagnosis.
And now I also have PTSD after seing my daughter have a seizure and going blue and not vreathing for 2 mins. 😭

Sorry about typos... Although pawdiatrician is a nice word 😂

Hi!
I’m sorry you have gone through this, did she have a temperature? Both my boys have had this in the past but was down to temperature, very scary though.
My little one is still on track developmentally - she’s only 6 months so far. How old is your little one?
Sending love xx

Definitely from her temperature. It was 41.9C
She's doing well developmentally. Spot on in every domain apart from speech. So will keep an eye on that.

Both mine were around 18-19 months when they had their first fit due to high temperature. It’s so scary and it shakes you up. Please don't worry about her if she’s developing well 😊They can have these convulsions with temperature, it’s so horrible x

Worst thing I've ever seen. Awful. You just feel so helpless. She was fine, then became a bit quiet and then started seizing. We were walking down the road. No warning signs really. That's apparently typical for febrile seizures. They come on when temp rises too quickly. I think it was roseola infantum. 3 days of fever, then rash, now back to normal

It’s awful. I was sat in the car waiting to pick up my eldest son from school, thought my other son had gone quiet in his car seat, looked back and he was fitting! It’s so scary! Glad she’s better now, it just happens to protect there brain from the temperature. But it’s terrifying for us.