does anybody know how many centermeters there babies enlarged ventricles were when they found out by ultrsound and how many weeks pregnant were you. Please tell me your story about your pregnancy and when you found out, how, and how it helped your situation.
Thanks !!
I was 23 weeks pregnant with my 2nd child when they told me he was going to have ACC, just like my first one. I do not recall any information on the size of the ventricles. At 31 weeks, I had an ultrasound done and they told me my child has a corpus callosum. This information at birth was found out to be false. I do not know, even now, what percentage of ACC Chris has. Honestly, I do not see the point of knowing before the baby is born. All it does is make you worry when there is nothing you can do at this time. Every child w/ACC is different and their development will be different. My 1st born is 4 yrs old and is functioning at a 4 month level. Chris is 12 months and is functioning at a 7 month level.
Ava’s ventricles measured 11-14 cm , depending on the angle the tech was measuring, I can’t remember how many wks pregnant I was, maybe 25? She is two years old now and is fine, we had no health or developmental issues. I hope this lightens your worries. She is a normal, healthy little girl, and was a strong healthy baby too.
smartypants agenesiscc-cpt8786@lists.careplace.com wrote:
We found out about the ventricles and the ACC at the 20 wks gender ultrasound . . . the ventricles were a side note to the ACC and we did not know how serious it could be until after Avraam was born and he first saw the neurologist. With that being said they have been stable the entire time (6 months) and we know no longer have to see the neurosurgeon unless something else arises. He does have seizures and is about 1 1/2 months delayed (we think that is from the 1 1/2 he was having seizures untreated) but that is (theoretically) from the ACC and is now being controlled with meds and his development has just blossomed. Like everyone has said before all of our children develop differently and many times without other complications are very close if not on the normal curb; but whatever comes our way we and our children are resilient and our babies show strength and abilities above all our doctor’s expectations. So please, keep your hopes up and now
that anything is possible and that whatever happens you will be blessed with the strength to not only endure but excel.
Lovina
----- Original Message ----
From: Myrica agenesiscc-cpt8786@lists.careplace.com
To: ltmslov@yahoo.com
Sent: Sunday, April 27, 2008 4:33:51 PM
Subject: Re: [agenesiscc] ventricles
I was 24 weeks pregnant and my Dr. told us our baby had Hydrocephalus (water on the brain) because of the way his ventricals were formed. I don’t remember how big they were but they were larger than normal. They told us he would need all kinds of surgeries after birth and for the rest of his life. My Dr. had me come in every 3 days to monitor the baby for stress from pressure on his brain. The rest of my pregnancy lasted a life time. Once he was born he looked and acted well. First thing the next morning he had an MRI and they told us it was ACC. At first we were upset because we did not know what ACC was. Once they explained it we were glad he did not need surgery but we felt like we had waited all that time to find out how we have to wait longer to see if he will have any problems. It was scary but god does not give you what you can not handle. Tanner is now 3 and he is doing well. We are very blessed that he has ACC and that he is progressing almost normal. He has never needed surgery and his neurologist says he is doing great. I used to tell my husband "it is almost easier not knowing the baby has problems while in utero and you can’t do anything about it, but it is for the best for the baby to know what you have to do when he is born.
Just take it day by day and TRY not to stress too much, you will love that baby no matter what. Congratulations on the baby and good luck
Amy
may i ask do both your children have acc
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Hello
My son has complete ACC and microcephaly. We found out about his acc through an unscheduled ultrasound at 32 weeks. His 20 week ultrasound was normal. At 32 weeks a midwife wanted to try out a machine so the doctor took various measurements and saw that the ventricles were dilated. I can’t really remember the size or what they are supposed to measure at for that matter. We were told later after better ultrasounds and an MRI that the ventricles were dilated because the fluid was filling in the space where the corpus callosum was supposed to be. We will have the first post-natal MRI in June and hopefully not find anything else significant. My son Tucker is significantly behind, but is a real joy. He laughs and smiles and whines and cries. He is 2 1/2 and is not walking yet, but are told that he will. He just doesn’t have enough balance yet. He sits up on his own and is starting to scoot on his bottom a bit. He started reaching very late, this past summer. So,
his arms and fine motor skills are very delayed. He is a big boy and loves to eat. He is not chewing very well yet, but eats semi solid foods. (Not baby food anymore) He is not feeding himself, but hopefully will some day.
Anyway… I don’t know if I was any help. You will get tired of hearing, wait and see and every child is different, but it is so true.
Abby
smartypants agenesiscc-cpt8786@lists.careplace.com wrote:
I tried to start feeding Avraam rice cereal at 4 months when the doctor gave us the go ahead and he was successful twice, then every time you tried to feed him he gags, chokes and vomits all of the milk from hours previous. We have tried to wait a couple of weeks and then try again but it just keeps happening he is now 6 1/2 months and still can’t take any consistency of rice cereal by spoon (we can put it in his bottle and have been doing so for ` 1/2 months because we needed to make sure he was getting enough calories . . . he only eats about 4 times/day because the pheno makes him go straight to sleep in the evening and not wake until later). Another issue is that he typically (every other day or so) vomits all of his first milk bottle in the morning (yesterday so much that it actually soaked through his little seat and was dripping on my floor). He has reflux and takes Zantac twice daily and I always wait at least 20 to 30 min before feeding in
the morning (no matter how famished he is ) but he is still vomitting the morning meal and sometimes last evening meal too.
On may 5 th we are supposed to see the speech therapist to do an assessment so hopefully they can help; BUT my ? is how many of you saw this type of issue in your little ones and how was it fixed, how long did it take, and what do you recommend I do. And, if you happen to have any other valuable info for this that would be great.
Overall, he is doing well . . . he is only 1 1/2 months delayed, is quite the conversationalist, loves to be around other people, LOVES showers, he is teething (one toothie), and is learning that the walker can go backwards (so cute), and he LOVES the step and play piano because of the music and rattles. So, overall he is developing well. We are still working on sitting and rolling from tummy to back but that is still within normal range, and has some issues with his torticollis still and his neck getting too tired (wallering his face while on tummy once neck gets tired) . . . so we are thrilled with all other aspects of Avraam excluding his feeding issues that I just need to figure out how to get a handle on. O’ he has NOT had a seizure in 2 months!!! YEAH!!!
O’ I will upload some new pics soon, he just had some done and is soooooo cute!
Lovina
We found out a few days after ds was born. They were trying to confirm bleeding on his brain after a traumatic birth (which they did confirm, but also found ACC). The MRI report from five days old just says “there is specific enlargement of posterior portions of both lateral ventricles reflecting colpocephaly” Colpocephaly, our neurologist told us, is sort of a sister to ACC. At the second MRI at thirteen months old, the enlargement seemed smaller for whatever reason.
I’m glad we found out after he was born. I was already stressing out during the pregnancy because I could tell his movements were “off” and I know I would have worried too much. The level two ultrasound we had looked perfect, and if it weren’t for the brain bleed we might never have known until he showed signs of delays (which may have been less obvious without the brain injury in the first place, we’ll never know).
Ds will be three in a few months and he’s just recently started walking and uses a few signs and a picture communication set. He’s a real joy in our lives!
Lovina
My oldest son had issues with swallowing as well. We had a swallow study done when he was about 6 months old. He was not gaining weight. At 7 months old, he weighed less than 10 lbs. They put him on a G-tube and had gained weight quite nicely. He’s still on the skinny side and the doctors seem to be a little concern that he hasn’t gained enough weight. He’s now 4 yrs old and today the doctor weighed him in at 25 lbs. I really don’t think his scale is accurate. All the other doctors have him at 28 lbs. 3 lbs shouldn’t be that much of a worry, but since he tends to get pneumonia 2-3 times a year, every pound counts.
The surgery itself is not too bad, about 1.5 hrs. But, we didn’t get any information on him for 3 hrs. It was one of the hardest decisions to make, but in the end we did make the right choice.
Your other option might be to see a nutritionist. They might be able to give you better options than a G-tube.
i was 20 weeks pregnant and the ventricles were dilated by an extra 0.22mm- so minute really. My daughter is now nearly 8years old - has cacc, developmentally delayed by areound 2years, has severe learning diffs, seizures but only in last year and very infrequent. i have 3 more children - all normal. My child with cacc has a very slow start but doing great now, still some social issues. Hang in there - its a tough ride but dont forget to catch a glimpse of the beautiful scenery that is your child, at least once every day!!!