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Sara's Story
"My daughter, Sara, was just recently diagnosed with congenital CMV. She is 3 yrs old. Here is our story..."
I got married in October 2007 (I was 25 years old) and just about 2 weeks after my wedding I got pregnant. I felt great- had a good pregnancy, besides some morning sickness. We moved to Israel from New York, 1 month after my wedding so my husband can study there. Everything seemed great. I switched my OBGYN around 8 1/2 - 9 months pregnant because I wasn't happy with that doctor. Also, in Israel, midwives usually deliver, and since it was my first pregnancy and in a foreign country, we decided to pay privately for a good doctor to deliver. So my new doctor did a complete sonogram and saw that my daughter's brain ventricles were slightly dilated. (In my 5 month sonogram, everything was normal). I was followed up until birth.
I gave birth in my 39th week - full term (July 28th, 2008) and my baby seemed healthy and great. The next morning, they did a head ultrasound and it showed that Sara had a grade 1-2 brain hemorrhage in utero that was dissolving on its own. The doctor found it a bit odd because usually IVH is more common with preemies, but they said it sometimes happens. Her platelets were normal, she wasn't jaundiced. She was otherwise healthy - 7.2 lbs - so they decided not to put her in the NICU and she came home with me.
We followed up when she was 3 weeks old for another head ultrasound and it showed no change and she was developing a mild hydrocephalus. We then went to a neurosurgeon. He followed her up and saw that her head was stabilizing and they did an MRI at 6 weeks of age. It showed that her hydrocephalus had arrested on its own, thank G-d, and she didn't need a shunt. But there were white matter changes in her brain that were non-specific but consistent with CMV. By this time we came back to NY to be with our family for the Jewish Holidays, and when we came back to Israel she was around 3 months old. We started physical therapy. We saw an infectious disease doctor around 6 months old and he checked for CMV and she was positive - but we weren't sure if it was congenital. Her hearing was within normal limits. We moved back to New York when she was 7 months old.
At this point, she was really developing nicely, just minor delays. Her speech was unbelievable - at 1 year old she literally knew 50 words. We had a follow up MRI at 1 year old and it showed again - periventricular white matter abnormality - might be congenital CMV and/or delayed myelination. We did a CT scan and it showed thank G-d no calcification. Her neurologist at that time diagnosed her with very mild cerebral palsy. We had her hearing checked and it showed a mild hearing loss - we weren't sure if it was lack of cooperation so we scheduled an ABR. We had to keep on rescheduling the ABR because she was either sick or had fluid in her ears. By the time she was 2 1/2 yrs old, we decided to do ear tubes because of recurrent ear infections, and did the ABR that day as well. The results came back as severe to profound hearing loss in right ear, and normal-borderline mild in left ear.
We were in total shock. I cried for weeks. All this time, my daughter was losing her hearing and we did not know. Her speech was always above average so we were in complete shock. At this point, I was sure that CMV must have something to do with it, since hearing loss doesn't run in our families. We even had a CT scan on her ears to make sure the bones and cochlear were fully formed. (Everything was good.)
I looked back at all my medical records from pregnancy (I kept everything if I had decided to come back to NY to deliver). When I was 3 months pregnant they did routine blood work and actually checked for CMV and my IGG was positive and IGM was negative (I had CMV sometime in the past but not a current infection). CMV was again checked around a week after birth (by my daughter's pediatrician) and my CMV status was the same.
I saw an infectious disease doctor here in New York recently and he told me to try to get my daugher's Guthrie card (the blood spot from when she was born) and he would get it checked. After much research, I was able to get it. We just found out last week that it was positive - she was born with congenital CMV. I had contracted this virus around conception and her fetus was sick from the start.
I blame myself for this, and cry every day.
I really have alot to be grateful for since she is very mild compared to the stories I have read. She is walking, running, jumping, going up and down steps - even though she is a bit slower than her peers. She is extremely smart - has a high average speech for her age. She had no feeding problems. No vision problems. She is the category of asymptomatic, late onset progressive hearing loss. She won't wear her hearing aid. She has most difficulty hearing in loud and noisy places, and has a hard time localizing sounds.
I fear every hearing test (we have one coming up on November 1st). I fear that she will get seizures. I fear that she will lose her sight. All this because I got sick in the beginning of my pregnancy and didn't even know. I never even took Tylenol when I was pregnant - that's how fine I felt.
I blame the hospital for not doing a TORCH on her because they knew something was wrong in utero. I even was able to get all her medical records from the hospital and someone had wrote in Hebrew to do a TORCH screening on her, but it was never done. Maybe she could have been given the medicine that's used for CMV and her hearing could have been saved. When I had told her pediatrician that I finally found out what Sara has - she had never heard of CMV before. She literally didn't even know what to tell me. It's so sad that not all medical professionals know about this common problematic virus.
When Sara was 2 years old, I had a beautiful and healthy baby girl. They are best friends and love each other so much. I am so grateful to G-d that my daughter got the mild case of this virus, and I pray every day that she will continue to be healthy. She is the love of my life.
- Shared by her mother, Nicole