Good morning and welcome, my name is Shanna Boot and today i would like to share with all of you my experience with Cytomegalovirus. Some of the things i would like to share with you are:
The birth of my son Jakob and his diagnosis of congenital CMV
How Jakob’s life has been affected by congenital CMV
How I contracted CMV
and How congenital CMV has affected our family.
If there is one thing that i am grateful for, it is my family. we have come a long way in the past 8 years. When we first found out of our sons devastating congenital virus, the news came as quite a surprise. we had no indication that Jakob would be born with any problems. it was only an hour before we were ready to leave the hospital with our new bundle of joy that the nurses informed us that Jakob would have to stay at the hospital for further testing. My husband and i were at a loss for words. That night i went to bed in tears wondering what could be wrong with my sweet baby boy. It was after many blood tests and poking and prodding around on Jakob that they allowed him to come home with us. it was on Thanksgiving Day that we entered the threshold of our home with our new bundle of joy. The nightmare was not over. We still did not have any answers and we had a list of doctors that needed to see Jakob. Some of the symptoms that we were able to carry to each of the specialist was an enlarged spleen, a small liver and a failed hearing test, his platelet count was also extremely low. These were only a part of the puzzle to be solved. after two months of blood tests and observations we received a call from the pediatric gastroenterologist. He confirmed that he was able to narrow the results down between two diagnosis’. It was between Cystic Fibrosis or Cytomegalovirus. He then proceeded to tell me that he would not know the final results until he returned from his two week vacation. my jaw dropped and again i was speechless. Now i might know what was wrong with my son, but wasn’t sure which one it would be and i had to wait TWO weeks to find out!! i have to admit that after this, it is mostly a blur. i have little memory of the steps taken after Jakob’s diagnosis, but i do know that we were seen by the appropriate specialists for congenital CMV. Nobody was sure what the severity of his condition would be, so he was under a watchful eye by not only his family, but also doctors.
By nine months old it was very evident that Jakob was not developing properly. He gave no signs or interest in wanting to sit up. He did not respond to his name or verbalize very much. We had his hearing checked by an audiologist where we found out that he had a moderate loss in both ears. It was at this point that we were encouraged to start therapy and get him involved in further testing. Jakob saw many specialist throughout the years and was further diagnosed with microcephaly, which he has grown out of, cerebral palsy, which has caused him difficulty in his ability to walk, and his profound deafness, which has resulted in his cochlear implant. Jakob has also had problems with tooth decay, sleep depravation, severe acid reflux and intellectual disabilities. Despite the obstacles that Jakob has been born with, he has persevered and overcome many challenges. He is now a happy eight year old boy who loves to play baseball, video games and laugh. He even competed in the Winter Special Olympics where he placed silver for bowling. He brings great joy to those around him and is a leader. He lights up a room when he enters and loves to entertain and make people laugh. He is a gift from God. He is special!!
Despite Jakob’s amazing demeanor and positive outlook on life, there was a time when i carried a huge burden of guilt for his disease. Cytomegalovirus or CMV is a virus that is contracted from the mother to the unborn infant. The guilt i felt was indescribable. I had gone through two pregnancies and had never been informed by any physicians of the threat of this disease, the simple precautions i could have taken, I had never been advised by my doctors about CMV. i had never heard of this virus until Jakob was two months old. It was only then that i did my research to find out that Jakob would have a very challenging life because i was not made aware of this virus! I feel that if the doctors that took care of me during my pregnancy had warned me of the severity of CMV or even told me what it was, i would have taken more extreme measures to protect my unborn child. Nevertheless, our family was fortunate enough to be placed in a wonderful church where i had access to the congenital CMV specialist at the CDC, Michael Cannon. We also were among many of the medical specialist at Emory and Children’s Health Care of Atlanta. I could see that the Lord was taking care of our needs. Through our faith and continuing belief that Jakob would persevere, we saw great miracles. At sixteen months and after many hours, days, weeks and months of therapy, Jakob began sitting up on his own. It was another year before he was able to walk without the use of a walker and now he is stable and self sufficient. At 18 months old Jakob had one last ABR to confirm what we were afraid of. Jakob had lost all of his hearing. This was good news considering now he was eligible for a cochlear implant, but sad news because this meant my baby would have to undergo a very long and risky head surgery.
The time came for Jakob’s cochlear implant surgery. As i watched my two year old being wheeled through the doors of the ER and waving his sweet little hand through the air, i knew our lives would not be the same. He came out of surgery groggy, but otherwise fine. We had updates through out the procedure from our wonderful Church Leader who was checking on Jakob for us. We were comforted once again. Jakob’s progress with the cochlear implant has been amazing. The moment he was “turned on” by the audiologist and he heard my voice for the first time singing and signing his favorite church song, his eyes lit up with great joy and his face beamed with a smile that only Jakob can share. There was not a dry eye in the room. Jakob could hear!! he has beat many odds through out his life and has stunned many specialists by his success. We have seen Jakob strengthen our family and sweeten our lives. he has the ability to touch those around him and share his sweet spirit through his smile and hugs. He is loved by his siblings and friends. he is truly a blessing in our lives!
How amazing God is! He brought us home to Georgia and planted us right where we needed to be before Jakob even arrived! He knew what was ahead of us and He provided us with the resources our family would need. After a few years of carrying this oppressive guilt and reflecting on all of this, I recognized that God had taken care of everything and would continue to do so, I had to let go of my burden. I just have to never forget that He takes care of me! Today, I accept that I could not have prevented this from happening to my child because I had no idea it could happen but I also know that it does not have to continue to be this way, we can protect our unborn children by informing our pregnant women.
I am not sure how and when i contracted CMV, but i do know that my risk for contracting CMV was much higher because of the circumstances i put myself in during my pregnancy. At the time i had a one year old at home with me, i was doing diaper testing at a local research center, i was participating in water aerobics and many other things that i should have been more careful with. I am here today to share my story with you because i want you to know of the risks. i want you to be aware of how to prevent your child from being affected by CMV and be more educated than i was. i know that my family has been fortunate and Jakob has only mild results from CMV, but there are families who have not been as fortunate, who have lost their child from this horrible, preventable virus. i encourage all of you who are planning a family to take great care of your unborn child. take all the proper precautions and pay close attention to the signs that are laid out for you today on this great congenital CMV walk and rollathon. thank you!!
