OB not leveling with me on englarged ventricle diagnosis (ventriculomegaly)

[Anonymous]

I had the 20w U/S yesterday and my doctor said most everything looked good but there was something to monitor. She said one of my daughter's brain ventricles was enlarged somewhere between 10mm and 11mm. She said it was borderline normal and she did not want me to worry.

I said "OK, what is the normal range?" She dodged that question so I asked again and she again dodged it and kept saying she didn't want me to worry. Then she quickly chimed in the "The good news is you'll get another ultrasound!" and quickly tried to wrap things up. I thought that was odd and I tried again to get more information, I said "OK, so say the ventricle is too large or gets larger, what kind of problems does that cause?" Yet again, she wouldn't answer the question and said I shouldn't worry. I noticed her facial expression did not match the tone of voice and realized she was, I won't say lying, but was not leveling with me.

I've, of course, googled it and I have learned it is Mild Ventriculomegaly and at 10mm is considered a diagnosis. I also learned that it is common to send a patient with a 10mm measurement to a specialist to have a level 2 U/S, bloodwork to test for infection and possibly and MRI often within 2-3 weeks.

If you were me, what would be your next step? Should I call her on Monday and ask to see a specialist? Or should I go to another OB for a second analysis?

[Anonymous]

I'm sorry you are dealing with this, and that your OB isn't straightforward with you. I know nothing about the diagnosis, but I would call GWMFM on Monday and get an appointment. They specialize in high risk and genetics and will be the right people to assess your baby's condition. I'm a patient there and I especially like Dr. Pinckert. All the best to you!

[Anonymous]

Oh, and you don't need a referral to them from your OB.

[Anonymous]

Thanks for both of your messages. I'm going to call Monday.

[Anonymous]

Anonymous wrote:I'm sorry you are dealing with this, and that your OB isn't straightforward with you. I know nothing about the diagnosis, but I would call GWMFM on Monday and get an appointment. They specialize in high risk and genetics and will be the right people to assess your baby's condition. I'm a patient there and I especially like Dr. Pinckert. All the best to you!

I agree that Dr. Pinkert is a good option at GWMFM. (Personally, I haven't had a great experience with some of the other docs there - Dr. Matia/Dr. Mazilli)

I've also heard good things about Dr. Sheri Hammersley, but have no personal experience with her.

[Anonymous]

DS is now 16 years old and had this exactly on my 19 week U/S. I did have more U/S done to follow, but also saw a geneticist at Children's in DC. Basically, it is a normal variant. Many of us are walking around with minimally enlarged ventricles, asymmetric ventricles, but with all the testing that goes on prenatally, we are just finding out these things before we're even born. Go see a specialist to allay your fears, but I am certain your baby will be fine. Good Luck!

[Anonymous]

Dr. Pinckert is really reassuring, so I think you'll be in good hands there.

[Anonymous]

I saw Dr. Gallagher at GWMFM (went there for all ultrasounds), and he was also very good.

[Anonymous]

Sorry for the stress, OP. Just to add a positive anecdote, a close friend had the same thing and they got a higher level u/s and kept getting scans every week to monitor until she finally said "no more monitoring". She has a beautiful perfect 9 month old now.

[Anonymous]

Thank you all for advice and encouragement. I need it desperately. I was having a serene pregnancy until yesterday. I try not to worry but it is, of course, impossible. However, I am determined to not fixate so that I don't stress the baby.

[Anonymous]

14:44 again: If I were you, I would not only consult with a second OB (and a high-risk one at that), I'd strongly consider switching doctors. I'm not sure what your history's like with this one, but I have no patience with providers who can't be honest with me. I wouldn't feel like I could trust her going forward. I mean, WTH? It sounds like there's a fairly standard protocol when these concerns arise, so why wasn't she following it?

I truly hope all's well and you get good news. Just wanted to add that perspective in case it's at all helpful.

[Anonymous]

OP, I have the same diagnosis at my 21 week scan. I am now 38 weeks. Ventricles were about 11-12mm. My OB referred me to Dr Bathgate at GW, and at 24 weeks, the ventricles were about 10-11mm. That started a whole series of sonogram monitoring. Finally at 28 weeks, Dr. Macri of GW referred me to Children's hospital for a fetal MRI, because he couldn't see the corpus colossom of the brain. That completely freaked me out. Luckily the MRI went well and the doctors that reassured me that the ventricles enlargement is so mild that I shouldn't be worried and sonogram normally cannot see corpus colossum anyway (really mad at Macri for scaring me!!). I was so grateful to Dr. Chang at Children's when she finally said "go back and enjoy the rest of your pregnancy." And then few more weeks passed and my OB asked me to follow up with GW again. This time round, they said ventricles are fine, but fluid is low and femur is short. They even suggested that this could be a dwarf baby, without considering that both parents are Asians and we are short people!! Now I don't go to GW anymore. In my opinion, they always will tell you the worst case scenario to cover they behind in fears of lawsuits. So I would say listen to you current OB and don't anyhow assume the worst by going to the highrisk Drs. I wish I didn't go to GW at a first place.

[Anonymous]

Anonymous wrote:OP, I have the same diagnosis at my 21 week scan. I am now 38 weeks. Ventricles were about 11-12mm. My OB referred me to Dr Bathgate at GW, and at 24 weeks, the ventricles were about 10-11mm. That started a whole series of sonogram monitoring. Finally at 28 weeks, Dr. Macri of GW referred me to Children's hospital for a fetal MRI, because he couldn't see the corpus colossom of the brain. That completely freaked me out. Luckily the MRI went well and the doctors that reassured me that the ventricles enlargement is so mild that I shouldn't be worried and sonogram normally cannot see corpus colossum anyway (really mad at Macri for scaring me!!). I was so grateful to Dr. Chang at Children's when she finally said "go back and enjoy the rest of your pregnancy." And then few more weeks passed and my OB asked me to follow up with GW again. This time round, they said ventricles are fine, but fluid is low and femur is short. They even suggested that this could be a dwarf baby, without considering that both parents are Asians and we are short people!! Now I don't go to GW anymore. In my opinion, they always will tell you the worst case scenario to cover they behind in fears of lawsuits. So I would say listen to you current OB and don't anyhow assume the worst by going to the highrisk Drs. I wish I didn't go to GW at a first place.

I'm one of the PPs who recommended Dr. Pinckert. I was previously a patient of Dr. Macri's at GW. He was my primary OB because I have a high risk pregnancy. Your story really resonated with me, because while I fortunately did not face any abnormalities, I am a big time worrier and also had the experience that Dr. Macri somehow had a talent to make my worries worse. He would always take everything I brought up super seriously and suggest further monitoring, instead of simply telling me that it was likely nothing and I should just relax. There was a point when I couldn't take it anymore and decided to switch. Dr. Pinckert is totally different. He'll talk straight to you, give you a straightforward opinion, and calm you down where it is warranted. So OP - not all high risk doctors will freak you out (they see so many serious abnormalities that they will be more likely than a regular OB to put your issue into perspective), so I would still highly recommend going to GWMFM. You don't want this to keep gnawing on you. And I would NOT stay with your current OB (unless you really like her for other reasons) - she seems like she also has some serious communication issues and isn't very good at handling such difficult situations.

[Anonymous]

OP here. Thanks to the PP who shared their experiences good and bad with the doctors at GWMFM. And to the posters with experiences with VM. My husband and are doing our best to keep fears in check and your advice and experience really helps.

[Anonymous]

Have you made an appointment, OP? And you probably know this, but since they've gotten mixed up in the past - GWMFM (Greater Washington Maternal Fetal Medicine) is different from GW (George Washington Hospital). Let us know how it goes and best wishes!