Microcephaly

[Felinewoman]

Hi everyone,

My little one has a very small head which falls into the range of severe microcephaly. We're currently being seen by neurosurgery, neurology and paeds. So obviously very, very worried.
Her development is normal so far and she doesn't look syndromic. I am just reaching out to other parents who have kids with small heads.
Tell me your stories.
I'd appreciate any input as I feel very worried, alone and scared

Hello
My child now have microcephaly as a result of her conditions and developmental delay. Sounds like you are in the right hands x

Hi felinewoman.
My 11 week old son has just been diagnosed. Still awaiting test results to find out the cause. You wouldn’t know he has it, just has a small head but otherwise doing what he should for his age.
How old is your little one?

Hello, any updates on your little one?
My dd is 10 months old. Her head has grown and now back on the 0.4th centile.

DD - is plain just dinky including her head. Her growth was patchy so she would spend time where her head went well under the 0.4th and dipped and times when it came back up to the 0.4. The rest of her is under or around the 0.4th and she has stayed like that for years. Her paediatricians did panic she had microcephaly after a notorious head not growing for over 12 months phase coupled with emerging complex and severe SPECIFIC learning difficulties. She did have input from physio’s, OT’s which helped. An Uber high calorie diet under a pead’ dietician helped her maintain her growth curve. Extra support was provided in school. She does have dyspraxia and she is profoundly dyslexic- bright but cannot write easily and cannot read her own writing so uses computers and mobile phones. Lots of bone surgery due to other issues not her growth.She opted for the vocational qualification route and now makes the most beautiful of decorated cakes and is considering training as chef next year.

Hope your little girl continues to develop and thrive. It’s not much fun when your the parent of the kid who is picked up for being medically ‘interesting’ because they are not following expected growth patterns. Tip: write down any questions you may have when you can so you can take them with you to appointments. I always found being asked ‘Do you have any questions’ was a quick way for me to go blank. IF extra help to encourage development is offered take it- it will not harm a child to have such extra help and if they do have a hidden delay it may help them to find a way to get round any issues they develop. My DD found the physio hard work but thought it was someone playing games with her. The extra input from OT’s helped her to develop a colour coded system to navigate around school with and sourced equipment allowing her to hold on to pens scissors and so on. As she grew she was able to use ‘triangle’ shaped pens and pencils that look almost like everyone else’s.

Hello felinewomen,

My daughter was born with a very small head in 2017 and it was just at 0.4 centile. First two years of her life has gone in figuring out why it happened what was the cause and while i am reading your message i can totally relate how you must be feeling. The uncertainty about how your child will grow and will be able to achieve all the age related milestones just overwhelming.

Initially i thought once we find the cause, we will fix this and things will be normal. But what i learnt early on, diagnosis or cause will not help my daughter, It is the therapies and early intervention.

We started physio and OT from 6 months. Slowly we started seeing the progress. Milestones were delayed like crawling came at 11 months and walking came around 25 months.

But i didn't realise in those initial two years when we were working hard to chase all those milestones that my DD is growing as a confident and very happy little girl.

She is 4 now and goes to mainstream school with some extra support. She plays with her friends and ride her scooter very fast. She loves singing and really tries hard in her ballet class.

Feel free to message me if you have any questions

Hi everyone,

I realised I never replied.
How are your kids getting on?
My daughter is now almost 2!
Her head is still small, between 0.4th and 2nd centile but developing fine. She is not talking yet (only a few words) but SLT have assessed and aren't too concerned as her understanding is fine and we're a multilingual family.
I am still obsessing about her development and small head though....
@Plantlady28 How's your little one doing?

@Kmohazzz it's nice to hear that your daughter is doing well! And as you said, the most important thing is that she's happy :-)

Hello. Lovely to hear from you all. Great to hear your little ones are doing well.
My little one has just gone 18 months! He was diagnosed with congenital cmv at 3 months old which has caused a lot of health issues and global development delay. But we’ve come a long way over the past year and love him for who he is. All the right health professionals are involved and we have a great team supporting him. Still has a little head though!

Hi, my DD was identified with microcephaly at birth, well below 0.4th for HC but 50th percentile weight. At 15months HC is still well below but weight down to 2nd. I feel like I have such a complicated relationship with her weight because obviously I want her to put on weight, but now the differential between HC and weight is much smaller so I feel like the microcephaly is not as noticeable. Health visitor sees DD once a month, we see paediatrician sporadically. Had an MRI at 7 months, brain structure is normal as far as they can tell. Been a bit late crawling and not yet walking but DD is super inquisitive, sunny personality, and HV has no concerns. Now awaiting genetics.
Anyway, I’ve been struggling to find info/ support/ anyone else in the same position- at birth the paediatrician gave us a vague “ I don’t know how it will affect her, it could be serious and affect her development or she might not be affected”, so it’s nice to read that you have children who are happy and enjoying life. @Felinewoman how is your DD at nearly 3?

Hello, my little one is doing fine. Her head has grown. It is still small but now around 3rd centile.
She has a speech delay but is learning. Now using 2 and 3 word sentences and cen definitely get her opinion across. Apart from that she is developing normally.
Her head was always around d 0.4th centile and then crossed centiles around 1.5 or so and is now considered normal I guess.
Some kids with microcephaly can have normal intelligence. Maybe yours will be fine and just has a small head?
How are your and her father's heads? Could be genetic?