Friday, April 30, 2010

About Leah

At my 20 week ultrasound, the u/s tech found that Leah's brain ventricles were measuring slightly above what is considered the normal range. On average, the brain ventricles measure between 4-7 mm. But anything up to 10mm can be considered normal. Leah was measuring about 11mm. We were scheduled for a Level II Ultrasound where a doctor confirmed these finding and suggested that we come back in a month and measure again. At this point, we were told not to panic, that it was quite possible that the ventricles would decrease in size and that even if they didn't we were borderline, so there may be no medical impact. We scheduled the follow-up level two u/s one month later. At that appointment , we were told that there were no changes in the measurements and were told to have a fetal MRI to check for any other brain abnormalities.

One week later, on 12/21 we went in for the Fetal MRI, the doctor talked to us before hand and told us that there were no known risks to a Fetal MRI, but there were also no studies on the effects of radiation on a fetus. We had to sign a release. Scott and I were so convinced that all of this was for naught and that our baby was fine. We debated not getting the MRI. I said to Scott, what if the baby gets here and has problems or is developmentally behind, if we have concerns, I am sure no on is going to offer to do an MRI for us then. We decided to do it. We signed the release. Did the test, it was done. Two days later we got the call that would change everything.

Leah had been diagnosed with a rare birth defect called a partial agenesis of the corpus callosum. The corpus callosum is the band of fibers that connects the left and right hemispheres of the brain and facilitates communication between them. People who are missing this part of their brain have a wide variety of challenges. Some of these include social inaptitude, troubles with complex problem solving, poor coordination or muscle tone, seizures, spasms, learning disabilities. ACC can also be a symptom of a larger problem or syndrome. Many of which can not be diagnosed until the child is much older. Many of these syndromes are associated with mental retardation and other more serious problems.

When Leah was born, another MRI was done and we were told that the ACC was not partial, but rather complete and she was missing the entire band of fibers. She also was born with pre-axial thumb polydactyl (an extra thumb). We had x-rays done at the hospital and found that there were two bones leading up to the knuckle, the after the knuckle there was split and two formed thumbs.

We will be seeing a neurologist, a geneticist and a hand surgeon trying to sort through her medical problems and figure out how we can give our special child whatever she needs to live the most rewarding life possible. We also will start seeing a developmental pediatrician and get into as many Early Intervention programs that we qualify for.

Our journey with Leah has just begun, she is a sweet baby and so far she is developing right on pace. We do not know what the future holds for her, but we are ready and willing to do whatever it takes to make sure that it is a bright one.

For information on ACC you can visit these links:



  1. Wow! I just found your blog on The Bump. I am sure that was a lot to take in. My son was born premature at 24 weeks and is currently in Early Intervention. He has made so much progress since he started and it has definitely helped him tremendously. Good luck!
    P.S. You are one tough lady with 3 under 3!! My two are 16 months apart and they keep me on my toes I can't imagine how you do it AND work!

  2. Hey Tara, I am glad to hear your story and want to encourage you that the journey can be okay after all. The unknown is what is unsetteling but sounds like you guys are doing anything and everything you can for your sweet baby girl. With the right help it can be okay. We share this in common as my son has complete ACC also. GL to you guys and stay strong.

  3. hey Tara i am going through a very similar suituation and the early stages and i would love to talk to you more about it because some of the ultimatums the doctors are giving me are so sad and scary and i was wondering if you experienced the samew thing with that too is there any way i can contact you personally to ask more questions