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.

They said that due to Covid it can take a little longer as well, which I understand but is still hard to leave an appointment none the wiser. I’d have preferred she hasn’t said anything at all and just find out from the paediatrician once she looked at the results. Even though an MRI sounds really scary, it’ll give us an overall picture of what’s going on in our little guys head and if there’s anything to be picked up it’ll happen then.

Do either of you know what the difference is between an MRI and CT scan?

Our little guy is just over 3 months old and doing everything he should be. Smiling, cooing back to us, kicking his legs, responding to people and he’s just started rolling from front to back. It’s hard somebody telling you their could be a problem when your baby looks totally fine and happy. We have a 2.5 year old son too and I’m feeling so guilty that all our worry and attention is on his younger brother at the moment.

@Jaim23 how is your little boys development? Has he reached all the milestones expected by 8.5 months? As worrying as it is you did the right thing by trusting your instincts and taking him to the doctor. Incredibly bad of the hv to tell you their isn’t a problem, I bet you feel so mad at them. But he’s in the best hands right now. All the tests and results are the scariest part but I think once there is some clarify you can deal with it and start living your life again.

Will keep you all updated

@Jaim23 hope everything goes ok with the x-ray. Will be thinking of you.

@Felinewoman keep up updated on your little one too

@plantlady28

Yeah it was a bit crappy of the person doing the scan to mention anything at all especially when she had no explanation to go with it. Covid 19 has messed a lot up but I personally think when it comes to a child's health there should be no excuses or hesitation.
I get what you mean, your little boy sounds like all his motor skill are fine and his awareness so all those things are positive, I personally think it is a bit harder when everything seems fine then all of a sudden things aren't so fine. It's scary and upsetting and frustrating. I guess the only thing to do is just enjoy the fact that your little boys is happy and active and take each day as it comes. It sounds like your other little boy may need some special mummy and daddy time when things settle. Once you know its a case of accepting and adapting isn't it? Easier said than done I know. If you ever want to write or rant or just share your thoughts your more than welcome to drop me an email or something, sometimes it's nice to get things off your chest without anyone you know telling you to be more positive or even having an opinion sometimes doesn't help, just putting it out there and knowing someone's reading is helpful. If you'd like my email just let me know.

My boy has just had his xray, he did really well we were in and out, so just waiting game now although I don't know if an ordinary xray is going to give us any answers. I'm not sure of the difference between ct and mri to be honest I can only guess each one is more detailed?

In terms of my little boys development, he's doing great he crawls he stands with furniture, he's started cruising, he says muma when he wants something haha. So there's no indication of delays or anything. He's very tired all time at minute but that could be anything so I'm trying not to associate everything and come up with conclusions. I'd never heard of microcephaly until it was mentioned, he definatley wasn't born with it so it would be aqquired if it is that. All you see on Google is horror stories so it's nice to hear from at least two people that their babies are doing well and just like other babies, it gives me hope that even if it is that it's not the end of the world in fact far from it.

Try not to be too angry with the world its a medical term for a range of possibilities so I don't think it's fair to just give you that diagnosis with no explanation of what it means specifically for your child.

Like I said if you would my email or just to write on here you know where I am. I hope you get some answers soon. Please let us know how he gets on. X

MRI - better for soft tissue, i.e. brain
CT- uses radiation, better for detailed bone scan. Only limited use for soft tissue stuff unless with contrast

Keep us posted about the results!
My little one also seems quite tired atm. But could be anything I guess

I wish I was coming back to you with better need. The paediatrician called earlier letting me know they found several abnormalities on our boys ultrasound, and is being sent for an MRI. They found calcifications on the ventricles of his brain. They suspect this is a congenital thing, meaning he’s got this from an infection I picked up and passed to him during my pregnancy. But a blood test will determine that.
I feel completely numb, everything that we were worried might happen is unfortunately happening. They have no idea what the future might be for him, could be anything from mild to severe.
Once we’ve got our heads around it we need to just enjoy him everyday and not focus to much on the ‘what it’s’, which is going to be incredibly hard. Ironically he’s just started rolling from tummy to back and he giggled for the first time today.

News *

@Jaim23 and yes I would love to email you

@plantlady28 oh I'm sorry :-( I can't imagine how you must feel.
Is there no chance he could be cognitively fine?
I guess the worst thing about this is that it might take years until you will know whether he has any issues.
Oh man. I don't know what to say apart from: enjoy those giggles! I love them. Best sound in the world :-)
Hugs from me

Oh my heart just broke for you. I'm so sorry that was the news you received. I think the focus now has to be on enjoying and celebrating every milestone. But I know this is just words and it won't make you feel better at the minute. It's going to take time to sink in. My email is [email protected] please email me any time you want to. Xx

Thank you both.
I think it’ll take time to get our heads wrapped around it all. The thing to do now is to wait for the MRI results so they can tell us what’s definitely going on, instead of saying ‘we suspect it’s this etc’. The paediatrician was incredibly helpful and answered all my questions, but she doesn’t have a crystal ball and can’t predict what the outcome is for our little boy.
I’m not really a spritual person, but I can’t help thinking that maybe these things are given to people who can cope with it. Either way as long as he is happy we will give him the best life full of happiness and not dwell on the maybes or could be. At the end of the day he’s here, and we just have to wait and see what happens with time. I’m not the most patient person In the world so this will be a huge journey and learning curve.

You sound like you've already kind of accepted it and that's amazing, you're a strong woman. your little boy will be loved and happy and through whatever journey you're about to embark, being happy and loved is all that counts. I completely agree and I'm not spiritual either.
I hope you get the answers you need soon so that you can all move on as a family xx

Hi everyone!
My son is 7 months and has microcephaly due to a genetic condition so a bit of a different situation. We found out the day he was born that he had a few birth defects and I was a mess,it was a nightmare.
We have a perfectly healthy 2.5 year old so it was really unexpected!
He's got a genetic condition that affects about 150 in the world. He's very unique!
Anyway,there are loads of reasons for microcephaly and there are loads of kids doing just great!
It took me a couple of months (and a few weeks of anti depressants/anti anxiety tablets!) for me to get my head round it.
But I am absolutely in love with my little boy and I'm sure,like my son,they will surprise you and amaze you every day!

Wow @stopusingmyusernames what an inspiring story, that’s amazing that your son is doing so well.
Were you told at his birth that he will have issues in later life, and has he surprised everyone with what he has achieved? Is his head still measuring small?
I’ve had a bad morning with it in my head, my partner is glass half full and I’m half empty unfortunately, but we balance each other out well that way!
Thank you so much for sharing such a positive story, it’s good to know it’s not all doom and gloom.

@Jaim23 any updates on your little one?

@Plantlady28 yes he's still 0.4th centile.
When he was born,the doctors thought he had a different genetic condition and that he might be deaf/blind and struggle to walk and talk. So that was awful.
We took him home after 2 weeks in hospital and to be honest,I didn't expect much from him.
But he's rolling,sitting,standing up against things,playing,weaning well,laughing,smiles at everyone and everyone adores him.
With his condition (we found out yesterday what he actually has) hearing problems,speech and intellectual disabilities is what we expect. But it can be mild or severe,we just have to wait and see.
I'd convinced myself of the worse which I guess a lot of us would do but now I just accept him how he is and he's a little joy x

Can I ask what condition it is?
There are so many causes for microcephaly...
It sounds like your little man is developing totally normally so far.

That’s so lovely, I’m so glad to hear a positive story! Is he doing everything a 2.5 year old should do it have you noticed some delays? Like you say, it doesn’t matter in the long run, they will bring you joy and happiness either way!

It's my 7 month old that has the genetic condition and my 2.5 year old is healthy with no medical issues.
My baby is very small (2nd centile for height,9th centile for weight and 0.4th centile for head circumference.
He isn't doing everything that his older brother was at his age but I am expecting delays so that's ok,he is doing so much better than I thought he would in my darkest times when my expectations were zero.
I bought him newborn toys for Christmas because I thought that's where his development would be but he's already playing with his older brothers toys
He was born with his oesophagus not attached to his stomach,his nostrils blocked with bone and his ears look different to 'normal' ears so it was obvious from day one that something was going on,we just didn't know what!
So we have had 7 months to get used to idea of him having some condition and time had absolutely been a healer.
His condition is called MFDM short for mandibulofacial dysostosis with microcephaly...longest name ever!
I found a Facebook support group and started my own page all about my sons journey and have received so much support,it was a lifeline whilst in lockdown! X

Sorry for the confusion, sounds like we are in a similar situation with our other 2.5 year old son!
It’s great to hear you sounding so upbeat, it sounds like time is the best thing to accept it and live your life with whatever gets thrown at you. Your little one will go down is own curve in life, he sounds so happy. How is your mental health now if you don’t mind me asking, are you feeling better about everything?

By the way @stopusingmyusernames would love to know your Facebook group so we can follow your journey, if you don’t mind?

My mental health is fine now,I came off the anti depressants after 2 months and that was over 2 months ago and I feel good and positive about the future.
If you can figure out how to private message me (I've just tried to message you but don't know how!) then please do and I'll give you our Facebook group name x

@stopusingmyusernames, wow what an insperational story. So glad to see so much positivity and how strong you've been. And how lovely to hear he is doing so well. He certainly sounds beautifully unique. You sound like a wonderful mum. Can't imagine what you've been through in the last 7 months trying to find some answers, I hope they've brought you some peace and it sounds like you've already moving on from the fact he has this condition. Amazing story.

@plantlady28, sorry to hear you've had a bad morning, don't feel bad I think you're going to have a lot of up and down days until you find your own normal. Don't expect so much from yourself, it's perfectly understandable to be upset and anxious. It will take time and I'm sure in 7 months time you will just be as positive and happy as stopusingmyusernames.
My little boy doesn't have craniosynostosis so thankfully no surgery required. Huge relief. We have to wait until November now for his appointment about his hc growth. I guess all I can do for next 6 weeks is enjoy my little boy and take whatever Comes when it comes.
Your do an amazing job and you sound like an amazing mummy, hang on in there. Xx

@stopusingmyusernames not sure how to private message on here, I’ll have a look! I really hope 7 months down the line I’m feeling as positive as you. Like you said it’s time we need to get our heads around it all. Did your little one have MRI/CT scans when it all started? How’s your eldest child, do you fine they’ve been affected much by this? I’m concerned my anxieties are going to be projected into my eldest but I’m trying my best not to show them.

@Jaim23 thank you for your lovely words. That’s great news about the x- ray results. 6 weeks is a long time so it’s likely his head could grow between now and then!

@Plantlady28 I just looked up how and you can't private message in the app so I've sent you a message just on the normal website page on the internet,log into that and you should see it x

How is everyone getting on? My little girl turned 9 months today. I did the monthly measuring and her head is still below the curve but growing... slowly....
It's my first child and I have no comparison to other kids really due to Covid. She can roll but sometimes gets stuck. She sits very well unsupported but can't get into the sitting position yet by herself. She is very keen on standing and started pulling up to stand. She doesn't crawl. She babbles a lot now.
Dexterity wise she seems fine, has pincer grip, passes objects, shakes things etc.
I am a bit worried about her gross motor skills. Do you think I'm panicking?
It's hard not to worry.

Hi @feline woman,

Hope you're OK! Glad to hear she's doing well. My little boy has turned 9 months today too happy 9 months to our little ones. I daredn't measure anymore I'm just going to wait until the next appointment it upsets when there's no change at all. My little lad only got into the sitting position his self last week so I wouldn't be too concerned about that yet id give her a little more time a month or so at least. She sounds very vocal which is good, mine is a bit lagging he will only say mama and ba no other consonants but I think he might just be a little lazy. She sounds pretty much where mine is to be fair she might have just grown out the rolling? Mine used to roll but since pulling to stand he doesn't really do that now. Crawling well, mine does but I do know a couple of babies that never crawled and went straight to walking so again could just that. I know it's easier said than done but try not to worry too much about milestones at the exact month. I think if by 11 or 12 month she hasn't caught up then id be asking for a bit more advice. X