https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Sat, 18 Apr 2026 07:17:48 +0000 https://boards.hellobee.com/topic/hydrocephalus#post-2924100 Fri, 18 Jun 2021 18:08:34 +0000 Mrs. Tiger 2924100@https://boards.hellobee.com/ <p>@Clementine12: very late to this but just chiming in to say I'd be happy to chat/email with you to talk about special needs babies/long NICU stays/developmental delays, etc. No experience with this particular diagnosis but my 2nd son (now 7yo) went through the ringer. Sending big hugs your way. </p> https://boards.hellobee.com/topic/hydrocephalus#post-2923820 Fri, 21 May 2021 09:26:57 +0000 Bluemasonjar 2923820@https://boards.hellobee.com/ <p>@Clementine12: Sending you hugs! I do not have experience with this diagnosis but my DS had a stroke at 18 months. At the time the doctors and specialists told me repeatedly they could not predict how it would impact his functions and abilities. Even now at 5 years old the specialists will note that some of his behaviors may have been present anyway so it is not possible to know if they were specifically impacted by the stroke.</p> <p>It was a grieving process for me, having to let go of my expectations for raising a "healthy" child. </p> https://boards.hellobee.com/topic/hydrocephalus#post-2923819 Wed, 19 May 2021 22:03:20 +0000 jhd 2923819@https://boards.hellobee.com/ <p>@Clementine12: thinking of you. ❤️ I have no experience with this specific diagnosis, but I know the stress that comes with getting a diagnosis in utero and all the uncertainty and anxiety that comes with it. Do what you can to take care of yourself. </p> https://boards.hellobee.com/topic/hydrocephalus#post-2923818 Wed, 19 May 2021 20:15:27 +0000 Clementine12 2923818@https://boards.hellobee.com/ <p>@pachamama: thank you so much. I really appreciate hearing things like this.</p> <p>I reached out to Mrs. Chocolate and she replied within the hour - so nice of her and she had a lot of encouraging things to say. I am swinging wildly between emotions - sometimes I'm ok and ready for this but often I'm in a state of disbelief and mourning. It's a hard time made harder by pregnancy hormones plus having a really rough pregnancy otherwise. I think its hard not knowing how things will play out, and knowing there are things we won't know for years yet. </p> https://boards.hellobee.com/topic/hydrocephalus#post-2923816 Wed, 19 May 2021 18:37:49 +0000 pachamama 2923816@https://boards.hellobee.com/ <p>@Clementine12: mama I know this is probably so hard right now for you. I wanted to share that I had a student (aged 15) with agenesis corpus callosum. Honest to goodness, I never would have known! He was quiet, maybe this slightest bit socially awkward but that could have been his personality. He was BRILLIANT. He had a 504 special ed accommodation for some things like redirecting and I think extended time on tests, but I remember reading about agenesis and being shocked that he had this "defect" and could seem so normal. I think he was an athlete too. Of course there is a range in prognosis, but I did want to share that! 💜💜💜 </p> https://boards.hellobee.com/topic/hydrocephalus#post-2923813 Wed, 19 May 2021 11:34:14 +0000 periwinklebee 2923813@https://boards.hellobee.com/ <p>@Clementine12: I am so sorry to hear this :heart: :heart: </p> <p>@thebeesknees: Thank you for sharing that Mrs. Choclate's son has been doing well. So encouraging to hear.... </p> https://boards.hellobee.com/topic/hydrocephalus#post-2923810 Wed, 19 May 2021 06:46:58 +0000 LadyDi 2923810@https://boards.hellobee.com/ <p>@Clementine12: Sending you and your family lots of love and strength while you navigate this. :heart: </p> <p>@thebeesknees: Thanks for posting this update about Mrs. Chocolate. She was my favorite blogger (RIP blog) and I often wondered how she was doing after she announced what was going on with her fourth pregnancy. </p> https://boards.hellobee.com/topic/hydrocephalus#post-2923806 Tue, 18 May 2021 15:55:45 +0000 thebeesknees 2923806@https://boards.hellobee.com/ <p>@Clementine12: she's not active anymore, unfortunately. You can try commenting on her wall and see if it might send her an email. </p> https://boards.hellobee.com/topic/hydrocephalus#post-2923805 Tue, 18 May 2021 15:50:05 +0000 Clementine12 2923805@https://boards.hellobee.com/ <p>@thebeesknees: bless you this is really reassuring. Can someone explain how to DM a person through HelloBee to me? I would love to connect with her. </p> https://boards.hellobee.com/topic/hydrocephalus#post-2923804 Tue, 18 May 2021 15:43:22 +0000 thebeesknees 2923804@https://boards.hellobee.com/ <p>Hi! Delurking to say that a blogger had this happen: </p> <p><a href="https://www.hellobee.com/2020/03/24/the-corpus-callosum/" rel="nofollow">https://www.hellobee.com/2020/03/24/the-corpus-callosum/</a></p> <p>I actually reached out to her during the pandemic (like early 2021) because I wondered how her son was doing. She said he's absolutely perfect and so far they've noticed no developmental delays. </p> https://boards.hellobee.com/topic/hydrocephalus#post-2923803 Tue, 18 May 2021 14:46:26 +0000 bhbee 2923803@https://boards.hellobee.com/ <p>So many hugs :heart: my heart hurts for you and your family - sending you whatever support the hb community can :heart: </p> https://boards.hellobee.com/topic/hydrocephalus#post-2923799 Tue, 18 May 2021 10:30:17 +0000 josina 2923799@https://boards.hellobee.com/ <p>@Clementine12: I'm so sorry. Sending lots of :heart: your way. :sad: </p> https://boards.hellobee.com/topic/hydrocephalus#post-2923797 Tue, 18 May 2021 05:59:46 +0000 JennyPenny 2923797@https://boards.hellobee.com/ <p>@Clementine12: I'm so sorry &lt;3 This must be a terrifying time for your family and a challenging road ahead. Sending you love and strength and hope for the best possible outcomes &lt;3 </p> https://boards.hellobee.com/topic/hydrocephalus#post-2923796 Tue, 18 May 2021 05:58:40 +0000 yellowbeach 2923796@https://boards.hellobee.com/ <p>@Clementine12: ugh my heart sinks reading this. ACC is a very gray diagnosis as you say, with no one really able to predict just how and how much it will affect baby. </p> <p>While different, I also got a prenatal gray diagnosis back in 2018 with our second pregnancy. At the time we were still unsure how DDs hydrocephalus would affect her (she was late on every milestone and we weren’t sure she would ever walk). We were so overwhelmed as it was, even before a second special needs kid. </p> <p>I’m so sorry your baby is sick. I am really hoping for the best possible outcome for you guys. :heart: </p> https://boards.hellobee.com/topic/hydrocephalus#post-2923795 Mon, 17 May 2021 22:59:31 +0000 Clementine12 2923795@https://boards.hellobee.com/ <p>@yellowbeach: thanks for the reply. I really appreciate it.</p> <p>We had a day of scans at a Children's Hospital and ended up with a diagnosis that the main connection between the two lobes of baby's brain never formed (agenesis of corpus Callosum). It read as hydrocephalus at first because the pockets bulged with nothing between them.. We have no idea how impacted he will be - there is a huge range, and it widens further if they discover any genetic issues after birth. I am 34 weeks now, and devastated. </p> https://boards.hellobee.com/topic/hydrocephalus#post-2923794 Mon, 17 May 2021 21:58:27 +0000 yellowbeach 2923794@https://boards.hellobee.com/ <p>@bhbee: yes thanks for tagging me! DD does have hydrocephalus, diagnosed at 4 months and a result of a stroke while in the NICU. Wasn’t there prenatally so a bit different of a scenario but happy to discuss. </p> <p>I was scared shitless and convinced my daughter would have severe impairments even after her surgery, but she’s a neurotypical 4 yo that you’d never know has hardware running from her brain into her abdomen. </p> <p>Waiting for surgery was the worst part. Even worse than the actual day of surgery. Happy to chat more if you’d like. </p> https://boards.hellobee.com/topic/hydrocephalus#post-2923733 Tue, 11 May 2021 15:21:01 +0000 bhbee 2923733@https://boards.hellobee.com/ <p>I'm so sorry for the anxiety and waiting! :heart:</p> <p>I remembered from this thread <a href="https://boards.hellobee.com/topic/chronic-roll-call/page/2#post-2812701" rel="nofollow">https://boards.hellobee.com/topic/chronic-roll-call/page/2#post-2812701</a><br /> that @yellowbeach has a child with the condition (and I think she's a doctor so would know a lot!). And unlike many old posters she's still active on the boards</p> <p>Hugs! </p> https://boards.hellobee.com/topic/hydrocephalus#post-2923732 Tue, 11 May 2021 15:20:04 +0000 kkuether 2923732@https://boards.hellobee.com/ <br /><p><i>This comment has been deleted by the original poster.</i></p> https://boards.hellobee.com/topic/hydrocephalus#post-2923730 Tue, 11 May 2021 12:22:45 +0000 Clementine12 2923730@https://boards.hellobee.com/ <p>@Corduroy: thanks :heart: </p> https://boards.hellobee.com/topic/hydrocephalus#post-2923729 Tue, 11 May 2021 11:23:56 +0000 Corduroy 2923729@https://boards.hellobee.com/ <p>I don't have any experience but I wanted to send hugs to you while you're waiting on the tests. </p> https://boards.hellobee.com/topic/hydrocephalus#post-2923716 Mon, 10 May 2021 19:19:12 +0000 Clementine12 2923716@https://boards.hellobee.com/ <p>This pregnancy has been a wild ride. I went in for a follow up ultrasound to check DS kidney (which is fine) and he was diagnosed with mild hydrocephalus. I'm a wreck and really trying not to Google as this is an anxiety trigger for me - we'll be doing an MRI later this week to get a clearer picture of things.</p> <p>Wondering if anyone had dealt with a hydrocephalus diagnosis in their kids? What was you NB experience like, how were things handled, etc. What questions should I bring to the MRI appt/specialist appts? Any info would be greatly appreciated. </p>