Shared on: 4/11/2008

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Entry from: 4/11/2008    Edit Entry

When I found out I was pregnant again in August 2006, we were thrilled. We had gone through some trials to conceive our twin boys born in 2004. Right from the start, we called her our “miracle baby.” After the initial excitement wore off I began to worry. I had been diagnosed with Lyme disease in June and finished a 21 day course of doxycyclin just days before I conceived and had also had dental x rays. My ob/gyn did an ultrasound at 7 weeks where we saw the heartbeat and he assured me that my concerns were really not a big deal. I was eagerly waiting for that 20 week ultrasound, both to find out that my baby was ok and to know whether we would have a boy or a girl. Since I opted out of other prenatal testing (nuchal fold and quad screen) my insurance company really made me jump through hoops to even get the ultrasound. Finally, it was approved and I couldn’t wait for November 28th to come…
It came. We went to the same high risk practice that had cared for me with my first pregnancy. The tech told us it was a girl and the doctor would be in shortly. After a brief hello, she began scanning the baby’s brain. We knew it wasn’t a good sign. After what seemed like a year, she told us that our daughter had mild borderline ventriculomegaly (1.1/1.2 cm) which could be associated with agenesis of the corpus collosum, spina bifida, down syndrome or could be nothing at all. Since I had opted out of the other tests, she told me we would need to move quickly with all my tests if we wanted to consider termination. We told her this was not an option, but agreed to go for blood tests (quad screen and torch titers). She told us to come back in two weeks. I cried all the way home and let my boys eat m&m’s for dinner when I got there.
Two weeks later, we went back. My quad screen had come back normal, but I needed additional testing because the test for cytomeglavirus (CMV) had come back “equivocal”. CMV, for those who don’t know is associated with blindness, deafness and severe cognitive deficits in children who were exposed in utero. I should also mention that there is only a risk if the mother has never been exposed prior to her pregnancy. They did the ultrasound and sure enough, her ventricles were larger, the dr. described them as “prominent” and referred us to the Children’s Hospital of Philadelphia (CHOP). Incidentally, it was 2 more weeks before I found out that the follow up bloodwork for CMV was negative. Although the doc blew me off about it, I did a little research of my own and found that there is cross reactivity between rheumatoid factor and CMV, which if the sample is not handled exactly right can skew the results. I am positive for rheumatoid and feel certain this is what caused that result.
When I called CHOP for an appointment I was again reminded that if I chose to come after the 24 week mark I would not be able to terminate. Still not an option for me, I only mention it again because it was so shocking and upsetting to me and it may be to you too if you are in that position right now. We made the appointment for the middle of the 24th week. We got to the hospital around 7 am and went through a whole day of tests: fetal mri, two hour ultrasound and fetal heart study. At around 4 p.m. we sat down with the doctors. That little plastic brain on the table is never a comforting sight. The doctors told us our daughter had hydrocephalus caused by aqueductal stenosis. They said it appeared to be progressive (her ventricles measured 1.6-1.9 cm at this time, which they averaged to about 1.7) They recommended amnio, but we refused when they told us that the only effect this would have on the care our child received was that we could “choose not to intervene in her birth.” I feel this is God’s choice, not mine. They gave us the scenario that should her ventricles continue to grow at the current rate (about 1mm per week) there was a chance that she would not make it. We cried a lot and worried a lot. On January 31st we met with a neurosurgeon who explained the shunting procedure and like all the others told us there was no real way to predict how Sophie was going to be until after her birth. At this point about 28-29 weeks we got good news that her ventricles were the same size as they had been. The next two scans showed stable measurements. At 33 weeks, we watched anxiously as always and noticed the numbers we 1-2 mm smaller than 2 weeks before. Interestingly, our team didn’t mention this and when we asked they told us that the baby was not in a good position but we could feel pretty certain that at least the ventricles were not larger. Unbelievably, when we went back at 36 weeks, the ventricles were down to about 1.3 cm. This was encouraging and the doc told us that she would probably not need to be shunted. We went back the following week for amnio (even though I had refused before, the hospital required it for a scheduled c section prior to 39 weeks. I chose to deliver at 38 because I needed to see my daughter as soon as they would let me) and they scanned her as well. Her ventricles were 1.1. No one could explain this, the doctors told us that the brain is a dynamic structure and just as they cannot say why a blockage or a condition such as aqueductal stenosis occurs they cannot say what would cause it to resolve. We were so happy and yet kind of numb, there was still no way that I could allow myself to believe that this was all past and everything would just poof and be okay, but I had hope.
Sophia entered the world on April 4, 2007 at 2:55 am (8 hours prior to her scheduled time, but we kind of knew all along she’d have a mind of her own). She was in the NICU for about 14 hours for tests and observation. Ultrasound after birth showed her ventricles at 1.2 and 1.3 cm, in that “borderline” range. In her first year, she has achieved all her milestones and is doing well. Her head size ranges from 97th percentile to off the charts from one well visit to the next. We were told after her birth that she should have a follow up MRI at one year old. Right now our insurance company will not approve it and we have decided to just be happy with our healthy and precious daughter.
I know that our story is not the usual and we consider Sophia nothing less than a miracle. Miracles do happen and the power of prayer is limitless. I will be forever grateful to Owen's mom for creating this site, it has been such a source of comfort to me and I look forward to the updates just like family. May God bless you and carry you in the palm of his hand on this journey…

Fetal MRI at 24 Weeks

Ultrasound at 29 Weeks


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