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I will try again...Microchephaly

(18 Posts)
AnaMaria88 Tue 21-Feb-17 23:16:17

Is anyone dealing with microchephaly in pregnancy?

TileTileTile Wed 22-Feb-17 16:58:55

I'm not no, but didn't want to read and run.

Are you ok?
Did you have Zika?

JessieMillz25 Wed 22-Feb-17 17:14:17

Someone I follow on Instagram has a daughter with this condition. I think their handle is HopeForHarper?

InsaneMummyOfThree Wed 22-Feb-17 21:10:52

I didn't want to read and run, I don't have experience of microcephaly but my son was born with a condition called craniosynotosis. Which is basically fusion of the skull. Are you OK, have you had diagnosis or is it just a suspicion at the moment??? Xx

AnaMaria88 Sat 25-Feb-17 17:43:15

Sorry, a bit late with the reply, I had my 20weeks scan about 3 weeks ago, they said the HC is very small and they sent me to the fetal clinic where I had another scan, done amniocentesis! On Thursday I went back to the clinic, the test came back all fine, head grew a bit but still too small, while everything else is at normal size! I have a MRI in 2 weeks time to see how is the brain affected! I m scared as hell as they asked me if I want to terminate the pregnancy! No way I will do this😢 we hope to the last moment that the baby will be fine and he will br born normal even with a smaller head

JOMH1982 Sat 25-Feb-17 18:42:42

What a horrendously scary time for you, just wanted to wish you all the very best in two week's time. I shall be hoping for the best news for you xx

ReturnToWorkSoon Sat 25-Feb-17 18:46:31

No advice but just wanted to say good luck & I hope everything is okay

ineedamoreadultieradult Sat 25-Feb-17 18:48:08

Good luck

bonzo77 Sat 25-Feb-17 19:00:51

Have you been tested for CMV?

InsaneMummyOfThree Sat 25-Feb-17 21:39:41

Have they actually mentioned the possibility of microcephaly to you or is it just ur crazy googling that has lead to this (if your anything like me, you turn to Dr Google at the first opportunity and convince your self it's the worst case scenario). So it's a good thing that all the tests came back normal and also a good thing that babies head has grown. You obviously thought about termination and it not being an option so are prepared (as much as you can be) that your child may have health issues. My son was born with craniosynostosis so his skull was fused causing him to have an abnormal shaped head. At birth no one at our local hospital could tell us anything about his condition, we were given a printout of head shapes with the one my son had circled and the pediatricians said this is what he has, He couldn't even pronounce it!!! We were sent home not knowing what to expect and I spent every night googling his condition and the out comes. I'm currently pregnant again and have some issues, been for extra scans and like you refuse point blank to terminate even if there was a problem. Try not to let it stress you out, my nan used to say "what will be, will be". Look at the positives for now and if baby is born with issues you will deal with that when you have to. I know I sound abit dismissive or blasé but once you accept that there's nothing you can do to change things its such a weight off your shoulders. Good luck for up and coming procedures. Xx

AnaMaria88 Sat 25-Feb-17 22:19:23

Bonzo77 I was tested and came out fine

AnaMaria88 Sat 25-Feb-17 22:22:47

InsaneMummyOfThree can you tell me more about your son condition? Did u knew anything from pregnancy? How is the shape? How is your son affected, meaning his growing well? Another reason they think my lil one has microcephaly is that his forhead looks flat so the head is growing more at the back! I m sorry if I can t find the right words

AnaMaria88 Sat 25-Feb-17 22:34:54

And yes, they did mention the microcefaly, on my first 2 reports was mentioned at the section 'indication', but on my last report it only says 'HC under 3rd percentile'! As they ruled out with the amnio results lots of things that could have caused microcefaly, I am more worried about his forehead, but not in the estethic way, as they say it might affect the frontal part of the brain, but this is what we can find out with the MRI! But, its always a but, even the MRI can go wrong at this early stage of the pregnancy! So i decided, after having the MRI, I wont go for any other further tests, maybe just a growth scan at the end of the pregnancy! The stress this is causing I know it harms more my baby! I m decided to leave it in the hands of God, and like you said, we will deal with the problem, if there is any, at the right time! Meanwhile, i ll try to make the most of my pregnancy, make the most of my baby kicks! I will never give up on him, it s the baby boy we ve dreamed of, the lil brother that my daughter is waiting and loving so much! How I will be able to look in my daughters eyes knowing that i ended his lil brothers life? 😢

InsaneMummyOfThree Sat 25-Feb-17 23:00:20

OK the fact that microcephaly was mentioned is a worry but if conditions that cause it have been ruled out and they are not still mentioning it well that's a good sign as well. Craniosynostosis is the general term meaning "fusion of the head". my son had metopic synostosis with trigonocephaly which means that the front of his skull, from his soft spot on the top of his head down to his nose was fused. This left him with a triangle shaped head when looking down from the top. This causes pinching to the front lobe and can cause learning difficulties and delays in cognitive development. Fortunately our son seems very much unaffected by the condition. No delays or anything. He has just undergone a corrective medical op called Cvr. This is where they remove the front part of the skull, remodel it using plates and screws then reattach it so he has a more "normal " shaped head and to give his brain room to grow properly. He has just turned two. There is a variant of cranio called bicoronal synostosis which would cause a flat forehead. This is the fusion of the coronal sutures running down from the soft spot on the top of the head to each ear. All this is alot of info, please take it as fact finding and not a diagnosis. All my sons scans were fine but I only had two and a very uneventful pregnancy. His condition was picked up at birth. He had a few breathing issues when tiny, as in sleep apnea but he is fine and growing well with no issues.

InsaneMummyOfThree Sat 25-Feb-17 23:05:09

Here are a few images from Google, just for you information.

AnaMaria88 Sat 25-Feb-17 23:08:35

I m glad to hear that he is doing well and that there are things to be done to improve his condition!

InsaneMummyOfThree Sat 25-Feb-17 23:18:19

Thank very much. I know its a worrying time for you but someone said to me that your only given what you can handle. I'm not a religious person or don't hold any beliefs like that but I do believe it's true. The past two years have been so unbelievably worrying and I really have found a strength that I never knew I had. Again, good luck and if you feel like doing so please update me as I'll be thinking about you. If it turns out your little one has cranio there is such an amazing community for support. Xx

AnaMaria88 Sat 25-Feb-17 23:31:02

Thank you so much! It means a lot to me to find people who know what i am talking about and to understand my worries!The last 3 weeks have been a hell for us! I have not mentioned before, but on Thursday after the scan and the test results we felt that we can hope, but soon after that, the doc that gave us the report, he was in the scan room with our consultant, came after us, talking to us like we dont know nothing about microcephaly and that we should choice the termination! The whole world crashed on us again! How did he dared to talked to us like that? Especially when there is no diagnosis yet?

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