My profile

I am the very proud mother of healthy 5 year old twin boys, conceived naturally and delivered at 32 weeks.

On August 19th, 2009, at my 20 week routine ultrasound, our baby girl was found to have bilateral ventriculomegaly of 16 mm, the corpus collusum was visible and her cortex was 10 mm thick. They suspect acqueductal stenosis.

I was sent for a toxo/CMV blood test, amniocentesis, and fetal echocardiogram - ALL are NORMAL! This is therefore an "isolated" case of severe ventriculomegaly.

We met wih a genetics counselor, pediatric neurosurgeon, and perinatologist. Not one was commited to giving us a clear prognosis.

At my 22 week ultrasound, the vents measured 18 mm bilaterally, cortex still 10 mm thick and because of the baby's position, the doctor was not able to see the corpus collosum this time. As with my 20 week ultrasound, the baby's head circumference is in line with her femur length.

I had a fetal MRI on Sept. 11th, 2009 and met with the neurosurgeon again that afternoon. He was more pleased with the MRI images and mentioned the ventricle system looked more like colpocephaly than hydrocephaly, because it's only the posterior horns that are enlarged. We proceeded to look up colpocephaly online and were completely horrified that it sounds much worse then hydro. Cerebral palsy is mentioned alot.

The MRI report states: "bilateral moderate ventriculomegaly" (duh!) and assumes there is aqueductal stenosis. Everything else in the baby's brain is what it should look like at 23 and 1/2 weeks gestation. The radiologist recommended repeating the MRI at 29 or 30 weeks to see if any structural abnormalities develop as the baby's brain grows.

Then my last ultrasound on Sept. 16th measured the ventricles at 14 mm, down from 18 mm 2 weeks earlier. But the obstetrician who performs my U/S's said not to get too excited about the actual number, rather, I should be happy the ventricles are staying stable.

Now we're in this very scary grey zone waiting for my next ultrasound and MRI. My next appointment is to consult with a new high risk obstetrician who will assess our case and discuss whether or not they will give me the option of a late 2nd trimester or even 3rd trimester termination.

I'm so scared for this baby and the rest of my family. I want to make a decision that is good for eveyone.

On Sept. 24th, I met with one of four OB's who perform 2nd and 3rd trimester terminations. She did a very quick U/S and found the posterior horns of the ventricles are stable at 17 mm. She said the baby has no club feet and her hands are not in a clenched position. She then proceeded to grill me on whether I had made a decision yet about terminating. I left the appointment very shaken. She was to meet with the rest of the high risk obstetrical team the next day to discuss my case.

The next afternoon she called to inform me that the offer of termination after a repeat 29 or 30 week MRI was off the table IF the ventricles remained stable and there were no other abnormalities found. I was floored. According to the radiologist and neurosugeon (2 weeks earlier), I thought they would give me chance to watch the progression of the brain and THEN have a chance to decide whether or not to proceed with my pregnancy. Now I was completely backed into a corner.

It's been 5 days since real, huge panic set in. I went for another U/S today Sept. 30, 2009, I'm 26 weeks pregnant. Everything is stable, including the baby's growth. The baby looks perfect and perfectly healthy besides the vents. The high risk OB I had met on the 24th sat in on the exam and exclaimed that the "cortex looks better than it did 6 days ago."

And so, I have decided to travel to Boston, MA early next week for a 2nd opinion. My husband is supporting my decision and said he will come with me too. The team down there will review all the U/S and MRI reports and look at all the copies on CD of every imaging test done. We will meet with a neurosurgeon and a neurologist who will hopefully shed more light on the prognosis for my baby. I informed the high risk OB here in Montreal that I need 1 more week to decide and she agreed to give me that.

I know it might seem insane to some others that I would consider terminating at this late stage, but I have two other children who I must consider too. G-d give me the strength to make it through the next week.

The neurosurgeon and neurologist we consulted with in Boston on October 5th, 2009, were equally optimistic about our baby's prognosis. They felt that given the stability of her ventricles (although still measuring 18 bilaterally) and the absence of any other visible abnormalities, her risk of having any major disabilities is minor.

I'm scheduled to repeat an ultrasound tomorrow and repeat the MRI on October 23rd when I'll be 29 weeks and 2 days pregnant. I am (mostly) comfortable with my decision to continue this pregnancy and hope that everyone around me will follow my lead, especially my husband.

I finally got the results from my follow-up MRI today, Nov. 6, 2009. The baby's ventricles have enlarged slightly, but everything else look ok (cc, cortex, gyration, etc). The radiologist here confirmed what the Boston doctors saw - that is, a tiny bleed on the left ventricle. I'm waiting to hear back from the neurosurgeon here in Montreal and the md's in Boston. I need to ask, how this latest finding changes the prognosis, and if delivering early may help her outcome.

Keep you posted ........(Nov. 6, 2009)