Avery - Utah

My name is Chelsey and this is our story of Congenital CMV.  Luckily for us the same year (2013) was the year that Utah had past the law to mandatory test children for CMV with no genetic reasoning why they were born with hearing loss.

My husband and I had no idea what CMV was nor did my O/B. I was hospitalized for about 2 weeks because I was in preterm labor with my son (Avery). I received all of the necessary steroids to make sure that he would have a fighting chance to survive, 2 weeks had come and gone. I noticed that I was extremely tired I mentioned it to my O/B  and he told me it was just because the size of my son and that I had been in labor for about 2 months with no progress. I went along with it because, hey he's the expert not me. 

Fast forward to July 2013 my wonderful son was born 4 weeks early. because of his size the wanted to test him for diabetes ( 9 Lbs 10 oz) everything came back normal. He had his routine check-up the next day and they told us that he didn't pass his hearing test in both ears. They told us that he may have residual  fluid in his ears and that they would test him again the next day.

They tested him again the next day and got the same result. They told us that we could take him home and to bring him back in a week to do another hearing test. He still didn't pass his screening. We continued this for about 2 weeks and they suggested that we have him tested for CMV. His pediatrician had no idea how to test him for it and it was her first patient ever that had congenital CMV. He tested positive for the virus at 18 days old. Our pediatrician referred us to an awesome ENT (Dr. Albert Park from University of Utah). Once we saw Dr. Park for the first time he suggested that we get an ABR on our son. We agreed and took him to one of  the childrens hospital outpatient facility. We had an appointment the following day and Dr. Park told us the same thing that the Audiologist told us, that he had mild hearing loss in his left ear and moderate hearing loss in his right ear. 

Dr. Park told us about Acyclovir and suggested that we get him on it as soon as possible. We agreed and we started the anti-viral regimen for 8 weeks. After the 8 weeks we got another ABR and it showed improvement. We were all excited about it. We thought the anti-viral had done its job. We still monitored his hearing every three months it continued to get better over time. Later he started to get ear infections. He was getting them every 2-3 weeks. So Dr. Park suggested that we get tubes placed. We asked him if this was due to the CMV and he told us yes. After he got his tubes placed they gave him an ABR right after his tube placement and his hearing came back normal. For us this was a huge relief. We took him for another hearing test 3 months after his tube placement and his hearing was still normal. Dr. Park was happy with the results and had us starting to come in once a year for regular checks. He got two ear infections total after he had the tubes placed.

He continued to have perfect hearing for 2 years. It was nice not having to go to the hospital every three months. While we were out of town he had gotten an ear infection the first time in 2 years. When we took him to the urgent care that was out of town they said that they couldn't see his tubes. When we got back from our trip we took him right to his ENT and he said the tubes were starting to come out and to come back in 6 months. We came back in six months and we informed the doctor that we had noticed he was not hearing everything we were saying. We thought well hes three maybe it's just him ignoring us. He looked in his ears and saw that the tubes had punctured his ear drums and that could be the reason his hearing wasn't doing well. He suggested that we get a hearing test done. We went across the hall and got another hearing test done. This time he had normal to mild loss in his left ear and mild to moderate loss in the right ear. 

We came back to the doctors office and he explained the test results to us and suggest that he get a tympanoplasty and myringoplasty which had a 95% chance to return his hearing to normal. We agreed to the surgery and he had it 4 weeks after the appointment. Once the surgery was done he told us to come in 8 weeks later to remove the packing and make sure it healed and to get another hearing test. Once the doctor removed all of the packing we took him to get the hearing test again and his hearing test came back worse he was now at mild to moderate loss in his left ear and moderate to sever in his right. The audiologist told us that he would be a good candidate for a hearing aid.  The doctor wanted us to come back in 3 months to have his hearing tested again to make sure the ear drums were completely healed. 

We came back 3 months later and the results were the same. So the doctor gave us the referral to get him fitted for a hearing aid. he was fitted and recieved his aid on 2/22. We saw a huge difference even though his hearing aid was only at 80% volume his response time was faster and we didn't have to yell to get his attention. 

He went in 3 weeks later to get his volume increased and the put it at 100 and still had mild loss at that volume. We will be going back in a few weeks to turn it up more. We have also been told that we should get him a speech evaluation because he is hard to understand when he talks to you. 

This has been our road through CMV and I am thankful that there is an organization trying to make the virus known. I would hate to have another family have to go through this stressful state of unkown. I hope my story can help others.

-Shared by his mother, Chelsey