Bad news from our 20 week scan

We had bad news at our 20 week scan today and was told the baby has hydrocephalus (too much fluid on the brain). We was told in some cases it can be a small amount and resolve on its own by the end of the pregnancy and other times like ours it can be a lot of fluid and we need to see a consultant for another scan and have to go to a special unit in Bristol for an MRI. Just wondering if anyones been through this or something similar and had a positive outcome or any advice on what I should be asking at the next appointment. I am devastated and can't think straight at the minute. Thanks in advance
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Help a mama out and respond anonymously on our forum. Bad news from our 20 week scan

My nephew had this. Heā€™s now a perfectly healthy 17 year old. It resolved on its own.

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No advice or input, just sending you and your little love lots of prayers, love, hugs and blessingsā¤

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Cherise Mcwatt Gibbs

So sadā€¦this happened to me at the 20 week scanā€¦It wasnā€™t good for us :cry: you can message me if ya like x

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Best advice I can give you. Donā€™t google anything. Wait untill you talk with the specialist

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My friend had this and it resolved on its own. She has a very smart, athletic 13 year old.

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Very manageable with a shunt. Prayers for baby and the medical team

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My son had this. The specialist nurse we seen first was awful told me to do amniotic fluid test which I refused, choose to do only scans an blood test. She looked right at me an said why not you know your baby is most likely going to die when itā€™s born anyways. Then asked me why I was crying ā€¦. My son was perfectly normal when born an is now a healthy happy smart 7 year old. Just try to stay calm I am hopeful for you that everything will be fine

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They told us the same thing. The second scan went well. But they told us the second scan is still not A hundred percent accurate.
But he came out perfect.
Smart little first grader now :smiling_face_with_three_hearts:

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God bless hope things get better

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Feel free to join my group . My daughter was born with hydrocephalus . She developed brain cysts in utero which caused it and she has a brain sunt to drain fluid . She is 13 years old now. She also has cerebral palsy and epilepsy . Parents of children with hydrocephalus

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My now 7 year old had this when I was pregnant with her I googled stuff and it scared the heck out of me but she was born perfect and we had to do some testing after she was born but it all fixed itself and sheā€™s a happy healthy kiddos good luck mama!!

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I was told my daughter had fluid on the brain and she would have to have emergancy surgery whenever she was born, but the moment she came out of me she was healthy and beautiful no brain damange no fluid on the brain nothing like that. She is now about to turn 4 on the 10th. Just keep positive thoughts and prayā€‹:heart::heart:

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A friend from high school had a daughter born with this. She went through many medical struggles and finally passed a few years ago at age 6. However, she was such a light of a girl and such an inspiration :heart: She was beautiful. Her name was Braylee and her known symbol is a bee which is the known symbol for that condition because aerodynamically, bees shouldnā€™t be able to fly, but they do anyway :heart: prayers, momma.

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I was born with hydrocephalus I just turned 30 November 1 and lived a perfectly normal life

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I had 5 operations 4 to 9 months old and a shunt put in but I am fine

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I had friend whos daughter had this and a tumor out come wasnā€™t good for her but momma wait let the Drā€™s see whatā€™s going on and prayers for a healthy baby.

My brother had a lot when he was younger and had surgery when he was born and heā€™s now 22 with 2 kids and it hasnā€™t caused him any problems

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My niece was born with it and had to have a shunt put in. Sheā€™s almost 12 and doing just fine

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They told me something similar with my son. The first scan ended up being wrong and the second scan went perfect. I worried myself sick. Perfect 9 year old now! Hopefully your outcome is the same.

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My Auntā€™s baby had this severelyā€¦ He passed away hours after birth. My son had this as well. It resolved. Heā€™ll be 27 next week. Best wishes, Momma. :v::heart:

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Hey there I know how hard this is, my 3rd baby has Spina bifida and we found out just like you at our scan. The best advice I have is get in a good group with parents that have been through the exact same thing you are going through, they are the best support ever, 2nd stay away from google and 3rd write down all the questions you have as the days go on that way when you get to your appointment you are ready and can get answers that you want (there are no dumb questions either) my inbox is always open if you need anything

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My dad had very bad hydrocephalus as a baby, he has shunts, and has had to have them replaced a few times in his life, but heā€™s over 50 and fairly healthy.

Donā€™t over stress this.

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They found fluid on my daughters brain at my 12 week scan. I was sent to a specialist for scans every 4 weeks to be monitored. She was born with fluid still on her brain and had to stay an extra day in the hospital In order for it to be looked at. Still there. She was checked every 3 months until a year old. At a year old when their soft spot starts to close and in order to be looked at now it would be more invasive so we decided to leave it alone because she was developing normally and showing no signs of delays. Neurologist and us all agreed that unless we started to see signs of her being delayed we would leave it alone. At about 4 she was complaining of headaches a lot so back to neurologist we went and we checked without being an invasive and everything seemed normal still. She is now almost 9 years old and still seems to be fine. And like I said last check at a year old fluid was still there

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2 of my babies had the same and my Dr told me not to worry. The second scan was normal and theyā€™re now grown and healthy.

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Ok so Iā€™ll be honest here and hope I donā€™t over step. My best friend over 45 years has a grandson and it started just like this with her daughter in law. Itā€™s emotional and scary to face but I will tell you the child ended up with a horrible and rare case of epilepsy. He has seized since birth he canā€™t crawl at over 3 yrs he still canā€™t handle food so most is liquid and as of yesterdayā€¦just YESTERDAY he seized 4 times the last the emergency services were called. This child has spent his life in and out of hospitals and canā€™t talk to tell anyone how he feels or if heā€™s in pain and how bad. This is a very bad case I realize but this is pure truth every single word of it and this is just the highlights and it started withā€¦ it ā€˜couldā€™ resolve itselfā€¦ if by any chance you are in Texas and around Scott Baylor Hospitalā€¦those docs KNOW this case!

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My friend had this and had to have some surgeries as a baby but sheā€™s 40 now.

I had a friend that was diagnosed with this in the womb and she was okay. I think they had to drain some fluid when she was a baby, but sheā€™s lived a healthy life :black_heart: prayers for you and your sweet baby!

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I was born with itā€¦ and Iā€™m fine. Keep the faith!! :pray:t5::pray:t5:

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My beautiful little boy has hydrocephalus. His birth mother (heā€™s adopted) found out during one of her pregnancy scans as well. The biggest piece of advice I can give, is if it has not resolved on its own when your baby is born DO NOT let a doctor try to convince you to wait and see if it gets any worse before having a VP Shunt placed. My sonā€™s original PCP (while he was still with the birth mom) convinced the BM to wait and he ended up having emergency surgery at around 1 month old. As a result, my little guy now has right side brain damage which led to cerebral palsy and a host of other life long medical conditions. Ask to see a pediatric neurosurgeon as soon as your baby is born.

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I was told this with my second pregnancy. Same exact thing at 16 weeks and they said it the whole time. Till the day I had him and the fluid they was catching was me not my baby

When I was 20 weeks that happened to me, my doctor sent me to get a level 2 ultrasound and by the time I was able to get in I was roughly 23 weeks and it had all cleared upā€¦ I was told sometimes the baby doesnā€™t get the momentum going enough to move the fluid around instead of just sitting n their brain is like a sponge and fluid sits in the crevicesā€¦ as soon as the lady started the ultra sound she instantly noticed all the spots seen were gone and the baby wasnā€™t at risk anymoreā€¦ Good luck!!

My mum was born with Hydrocephalus she had a shunt put in newborn which lasted 44 years before needed replaced sheā€™s happy healthy and had me and my sister sheā€™s 55 and still living a great life :heart: xxx

My 28 year old daughter has Hydrocephalus and a VP shunt. She is fine medically, however she is developmentally delayed from having a stroke before she was born. Thatā€™s what caused her hydro

My son had it not picked up on any scans only at his 12 month check when health visitor said his head was 9ff the sxale(meaning take measurer) had 3 mri scans 1st one revealed hydrochephilis 2ns to wasnā€™t worried heā€™s now 6 nearly 7 and has checkuos every 12months everything us fine now.

A friend of mines daughter has fluid on the brain and she is like 6 years old and the most happiest girl Iā€™ve ever seen sheā€™s always smiling and keeps doing new things all the time.

Ellen Maw Hutchinson I figured u would be able to give this Mama some advice

I knew 2 people with this as well , both of their " now adult " children are fine, very scary for a mom thošŸ˜Ŗ

My son was born with this. He had a shunt placed when he was three months old. He is currently 9. He does have epilepsy which can come from hydrocephalus but he also has a lot of other medical issues. He was a preemie. Itā€™s scary but like others have said DO NOT GOOGLE IT. I made that mistake and printed off over a hundred sheets about it and stressed myself out badly. It can be managed and the child can go on to live a healthy life.

I myself was born with Hydrocephalus. I had a shunt put in at 2 days old. Iā€™ve had to have 1 major surgery when I was 8 due to it clogging and another at 12 to get it lengthened for growth. I am now almost 41 years old, I own my own home and have a daughter. Those 2 surgeries and maybe 2 seizures my entire life are the only problems I have had and not 1 seizure since I was 8. Just have hope and pray, miracles happen every day!!!

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With my third daughter they thought they saw a gastric bubble and ā€œsomething else suspiciousā€ and sent us to maternal fetal medicine for another scan and they didnā€™t see anything in that scan. Try not to stress mama. It could be just the way it looked on their scan. I hope you get good answers :heart:

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Iā€™ve been through this. My son is perfect and healthy :heart:

My son has hydrocephalus. He is a happy healthy 13 year old <3

This happened with my son. He was born perfectly fine, had some brain scans after birth and he is now a healthy happy 7 year old boy! I was absolutely terrified when they told me, itā€™s easy to overthink it. Everything will be fine :heart:

Oh my goodness honey!:revolving_hearts:
Your baby is specially and wonderfully made FOR YOU.!:heart:
You will be just fine my loveā€‹:pray:t5::people_hugging:

When I was in school, there was a girl who had the same issue. During school and in the car she had to wear a helmet, she was always so bubbly and everybody knew her, we knew about her and we all watched out for her. Got a little extra time between classes and little things like that. she had school set backs but got through them (held back a grade by a teacher who was harder on kids with needs), but was just like any other kid. She eventually didnā€™t need the helmet as fluid had reduced some, and ran into her few years ago (she was about 25) and she was working full time, had a fiancĆ©, and wanted to adopt because she didnā€™t want to pass on her condition (thatā€™s what she called it). She didnt let it hold her back! Still did dances, proms, homecoming. She was determined to live life to the fullest. Her mom ended up raising her on her own as dad couldnt deal (he couldnt handle ā€œnormalā€ kids either as she later found out). And she chose not to drive but she could. I get its scary but things will be okay!

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Praying for you and your baby :pray::pray::pray:

This happened during my first pregnancy and by the next scan it was gone. My OB said it is very common. Sending prayers. :heart:

Prayers coming your way. God Bless

I was 29 weeks when they found out my daughter had it got a big scan and went for a second option to see how bad she had it itā€™s hard

I have not so sending g positive thought your way. I do however have a friend who had it from when she was a baby up until about 5 or 6 years ago. She is now 30 with her own healthy baby boy.

Itā€™s not quite the same but my high risk OB swore my last baby was going to have kidney problems and it was for sure due to a genetic defect. She is a happy healthy 14 month oldā€¦with no kidney problems or genetic disorders. Sometimes they are just wrong. Good luck mama :heart:

Not the same situation butā€¦

My first pregnancy our son developed hydrops (fluid buildup on all of his organs). The specialist we were seeing pushed an abortion on us (we said no) and kept pushing for us to plan for comfort care after delivery after a few tests when he couldnā€™t determine why the hydrops developed.

We even saw a pediatric cardiologist who ruled out any heart issues and told us to get to transferred to another hospital he suggested ASAP because the specialist we were seeing was not equipped to handle what we were going to need to prepare for. The specialist refused to refer us for weeks because of his ego.

My suggestionā€¦ make sure youā€™re 100% comfortable with your doctor and trust them whole heartedly. Make sure they that if they arenā€™t listening to what you want for you and your child that you change doctors to someone who will listen.

Try your best not to stress as stress is not good for babyā€¦ which is much easier said than done.

Prayers :two_hearts:

My daughter is currently dealing with this. Shes getting a new shunt placed tomorrow!

I have hydrocephalus. I was born in the Soviet Union when they didnā€™t do pregnancy ultrasounds. My mom said my hands and feet were shacking for a bit when I was a baby but other than that nothing.

Fast forward to when I was 20. I had my first seizure. I had a few more in the last 15 years. I do not need a shunt or medication. I see a neurologist annually and have an MRI maybe every 5 years. Good luck Mama :heart:

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I had this and had a shunt put in as a baby and it replaced at the age of 3. I am now 33 years old and a mommy to 5. Never give up hopeā€¦God works in mysterious waysā€¦prayers for you and baby

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Start looking into genetic testing. The NIPT can give you answers that may put your mind at ease. Insurance may cover it too.

I received the same possible diagnosis with my first son around 32 weeks. Was considered high risk for the last several weeks. It ended up correcting itself by the time he was born.

Its scary when they throw stuff at you so early in pregnancy. Youre being referred for further tests /scans so try to relax and trust your experts to do whats right for you and baby. Good luck xx

I found out that my son had hydrocephalus at 36 weeks and had to be induced a week later because of it. His case is relatively mild, thankfully, but they couldnā€™t tell me anything more than the fact that he had it until he was born. He was monitored closely by a neurologist and neurosurgeon and at 6-7 months old he had a procedure called endoscopic third ventriculotomy/choroid plexus charterization. This is the option that we chose over a shunt since he was eligible for it. The procedure was successful and he is now a happy 6 year old who has no restrictions and lives a normal life. He has to wear adult sized hats/bike helmets/dirt bike helmets but other than that heā€™s just as normal as can be. Everyoneā€™s case is different but I hope that everything goes great for you and your child.

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I have been through the exact same thing. Our little boys brain did not develop at all due to all the fluid. Please feel free to PM. Sending you so many prayers

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I donā€™t have any advice but I do have a friend that is now 44 who had this as baby. I hope that information helps easy your anxiety a little.

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Prayers going up for you and your family. My best advice would be to do some research. Knowledge is power in this situation.

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My son has hydrocephalus when he was born his head was like moosh but at a month old we put a shunt in and he now 5 and no issues. He has other things going on but the hydrocephalus was a small one compared to others. Iā€™ll show you his head since you can see it clear right now (sorry weā€™re going through a bone marrow transplant had chemo and killed his hair)

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My grand daughter has Hydrocephalusā€¦Shes good so far and will be 4 in a couple monthsā€¦:slightly_smiling_face:

I was diagnosed with the same thing! Incredibly scary moment to say the least. They said it could resolve in time so they took a scan 2 weeks later and is was all gone, they continued to monitor it and it never came back. We were so thankful. I hope ypu receive this good news too! :heart: prayers mama!
Vid of my now 5month old Donovan :blush:

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We were told the exact same! I was told at my 32 week scan though. He was born Saturday and is perfect. They did an MRI and fluid is in normal range.

My step son is a walking miracleā€¦doctors just give you their best guessā€¦they said abort him he wouldnā€™t make it utroā€¦then he wouldnā€™t make it to one yr and then he would never walk or talk or drink/eat by mouthā€¦he is 24 yrs old and donā€™t shut tf up is always eating n drinking something and giving an opportunity will take himself on a stroll all without even a walker. Handful yesā€¦but the compassion understanding and joy that boy has brought to not only his family but the whole community!! Donā€™t stress gods plan

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My son had fluid on his kidney and anacardia with his heart both resolved ! Good luck momma

My cousin was born with it. He had a stunt put in as a baby. He is in his 30s married with two of his own babies now. :heart::heart::heart:

Our little baby boy had the same, in our case his brain had turned into fluid and we had to terminate. One of the most difficult decisions of our lives, but I trust that the Drā€™s knew what the best was. I am thinking of you and praying for insight, courage and strength to get you through this. Get as many opinions as you feel you need. :heart:

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My son had that and has to have surgery on his head at 5 months. He is almost 30 now and everything is good!!

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My boyfriend is 28 and has had it his whole life with no knowledge of it until we got into a car accident 2 years ago and had to get a cat scan

My mom was told, I would be born with fluid on my brain. I was born 2 1/2 weeks late! But, no fluid on my brain! And I was healthy! 30 years old now

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I have a 30 year old daughter born with Spina Bifida and hydrocephalus. They placed a shunt at 2 weeks old to drain the fluid. Praying for you all.

My son developed hydrocephalus at 4 months old after a fall at his grandparentsā€¦ I went through Hellā€¦ I was told he would never grow up to be a ā€œnormalā€ kid and he would be seriously delayed BUT he is 6 today happy and healthy with no sign of being anything but normal and he is thriving and perfect!

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My first born was diagnosed with this at the 20 week scan. Had an mri and weekly scans and at birth had resolved on itā€™s own and now she is advanced and thriving.

My daughter has it we did a shunt

Been there. It resolved all on its own and heā€™s a healthy 4 year old with no issues! :heart::heart::heart:
Thoughts and prayers as you maneuver this.

Get the best medical advice that you can. Every case is different and your experience will differ from the ones on this forum.

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Prayers for you :pray: They told me the same about my Sonā€¦said I should terminate the pregnancy and I refusedā€¦He was born a healthy 9 lbs 1.6 ozā€¦no site of the issues they wanted me to terminate forā€¦He is almost 20 nowā€¦Hell on wheels lol. :blue_heart: Good luck Mommaā€¦sending Prayers :blue_heart:

My brother was born with hydrocephalus. He had shunts placed when he was a baby and has had to have them replaced a few times since than. Heā€™s 45 years old. Itā€™s been a challenge at times but heā€™s healthy otherwise. Heā€™s also been in the care of one of the best neurosurgeons in the country. Good luck

My daughter has hydro, her vents were mid 30s each one 2 weeks before birth. Sheā€™s surgery free and a complete miracle. Sheā€™s so smart and a normal little girl. Sheā€™s proved Drā€™s wrong completely. Sheā€™s also missing her csp and all the pressure drained at 3 days old. My mom commented on this post above with a picture of her but heres one of her with a pony she met yesterday

Thereā€™s a group called ventriculomeglay (hydro without pressure) and they have alot of positive stories. Where I share ours in more detail aswell as many others. That group honestly gave me the most positivity and hope so I highly recommend you join there. Stay positive and try to not stress as I honestly feel like the weeks that were super rough and my anxiety and stress was super high they jumped higher than they did on average (if that makes sense)

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A Stent is usually placed in to drain the fluid away. You need to do homework on the best maternal fetal medicine docs in your area to see if an in uetero Stent can be placed or whether itā€™s safe to wait for delivery

A coworker of mine had this with his son. He did surgery and several treatments but is two normal and great

Me I was told at 21 weeks my baby had what it looks like hydrocephalus also the he was missing a part of his brain and they refer me to see an specialist for a second opinion after running some tests they told me he was normal I will be sending prayers your wayā€¦

Hang in there, I pray that everything is going to be okay :pray::heart:

I had developed Hydrocephalus after being born 8 weeks premature back in 1991.
I had an operation to have a cerebral shunt when I was a baby.
Iā€™m now 30 years old with a child of my own.
Itā€™s not always bad news, wishing you all the best with the remainder of your pregnancy x

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My youngest had thick fluid at the base of his neck and it turned out he had trisomy 18. He was born full term. Blessings to you mumma :heart:

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Get a small notebook. Write down any questions you can think of to ask your doctors, you can be overwhelmed in the appt and forget. Also write down things they say so you donā€™t get into the upset dog and forget what they were explaining. Get second opinions! And doctors will give you all of your options but you do whatā€™s best for you guys and your baby.

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My youngest has this. She also has spina bifida. She had to have shunt (a device that drains the fluid off the brain into the abdomen) and she has 4 of them. But she is 4 almost 5 year old and is doing amazing!!! Normally the 1st year is the hardest, I know it was for us. Thereā€™s going to be lots dr appointments, lots of hospital stays, but if you have right teams, you and your child will be perfectly fine. My daughter can found to 10 in Spanish, 50 in English, knows colors shapes and talks all the time

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My middle child rose. When we found out she was a girl they found the extra fluid in her Brain. I got extra ultrasounds and every ultrasound there would be more. So when she was born they took her and did an MRI and it went away on its own. And there made a point to measure her head at every doctor visit she had. She is happy 6 year old now

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My niece had this. They have specialists for this in Houston. Prayers for you and your baby. :pleading_face::heart:

Just make sure the dr keeps up the visits and is measuring the circumference of the head. My niece was born with this and the drs didnt do the measurements properly and sadly she still has it and is 13. She also has dandy walkers syndrome.

Prayers for healing.

I was told this with my last 2. And told it might be trisomy 18. They kept a close eye on it. It turned out to be nothing. They just have big heads lol

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Do not Google things is best advice I can give . I wasn on bed rest and a lovely lady on the unit with me was told her baby had trisomy 18 and she should terminateā€¦sheā€™s healthy beautifull almost 5 year with no health problems, I was told at 23 weeks I had max 24 hours and I would be delivering my twins based on my scans ā€¦I held on almost 4 whole more weeks ā€¦ sometimes u just have to breath and have faith as hard as that sounds . There scans can be wrong . Lots of prayers going your way ā€¦breath momma .

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Had a student with this. Smart but had difficulty in math. A sweetheart. They out a shunt in her brain to drain off excessive fluid. Monitored medically. Couldnā€™t have trauma to her head.