Back to Stories
Jackson's Story
"We were very excited when we found out we were pregnant with our second child in November of 2001..."
My due date was July 4th. We wanted our kids to be about 2 years apart and Daisy would be 2 on June 23rd. So this was perfect! I was much sicker with this pregnancy than the first one so we thought it was probably a boy. When I had the first ultrasound, the doctor confirmed we were right and moved my due date to the middle of July. He said it wasn’t unusual for the due date to be off by 2 or 3 weeks. When we went for our next appointment, the doctor wanted to do another ultrasound. This did seem unusual because we had only had like 3 all together when I was pregnant with Daisy. This time the doctor moved the due date out a couple more days. Still he said it was nothing to worry about.
I had several more ultrasounds and my due date just kept moving out farther and farther. The last ultrasound said August 8th. But my doctor decided to schedule a c-section for July 24th. But Jackson had other plans. I started having contractions on July 22nd and Jackson was delivered via emergency c-section on July 23rd. Every time I had a contraction, his heart rate would bottom out. After the doctor delivered him, they discovered that he had a bowel movement but had not aspirated any of the meconium. He only weighed 5 lbs 12 oz but clearly was full term. He spent the first 12 hours under the oxygen hood because of the meconium. They did some blood work and discovered he was jaundiced. So he spent 2 days under the bili light.
Two days after he was born, my doctor released me to go home but Jackson’s doctor came to my room and said he was pretty confused by his test results and symptoms. So he wanted to med-flight him to Arkansas Children’s Hospital for them to do more tests. A few hours later, Jackson took a helicopter ride and Toby and I drove an hour and a half to Little Rock. By the time we got there, they had already done ultrasounds and CT scans and more blood work. They found tiny calcifications in his brain, his liver was enlarged, his spleen was enlarged, his platelet count was very low, he had petechiae (micro-bruising), he had microcephaly (a small head), and he failed his newborn hearing screen.
By the next day, they had decided that he probably had congenital CMV but needed to do a 3 day blood culture to confirm the diagnosis. Of course, I had never heard of CMV. The people from the infectious disease clinic explained to me that I had caught a virus while I was pregnant that made him sick. But they assured me over and over that it was not my fault. It was nothing that I done wrong and there was nothing that I could have done different. Then they started to tell me what all could be wrong with him in the future...deafness, blindness, developmental delays, Cerebral Palsy, seizures, and the list went on. I was pretty scared for my little boy. But in the 3 days that we waited for the blood culture to come back we had to get his platelets up in order for him to go home. Luckily, both Toby and I had the same blood type as Jackson but I couldn’t donate platelets because I had just had surgery. Toby donated platelets but it took 48 hours before they would be ready to use. In the meantime, they gave Jackson a drug used on HIV patients that would hopefully build up his platelet count. Thankfully, it worked and he didn’t have to have the platelet transfusion.At the end of the 3 days, the culture confirmed that Jackson did have cCMV and by that time Jackson’s platelet count was normal and all of this other symptoms had improved. So he was released to go home after just 5 days in the NICU with his only known complications from cCMV to be the calcifications in his brain and hearing loss.
We brought him home and tried to carry on as normal as possible. When he was about a month old, he started having bad ear infections. He was taking antibiotics more than he wasn’t taking them. When he was about 3 months old, his pediatrician wanted to give him PE tubes to help with the infections but he needed to weigh 10 lbs before they felt comfortable doing the operation. Finally by the time he was 4.5 months, he weighed enough and got his first set of tubes. (There would be 2 more sets to follow by the time he was 18 months old.) This helped the infections because we could just put drops in his ears instead of him having to take oral antibiotics. When he was about 6 months old, he went for a sedated Auditory Brainstem Response (ABR) test to determine how bad his hearing loss was. He was diagnosed with a mild to moderated hearing loss in both ears. At 9 months old, he was fitted with bilateral hearing aids. He wore analog hearing until he was selected to be part of a study of the affects of speech development in children that wore digital hearing aids versus analog hearing aids during the language development years when he was 18 months old. Because of this study, he received digital hearing aids, extra hearing screens, and extra speech evaluations that he wouldn’t normally have gotten. I believe that he benefited greatly from the digital hearing aids.
At this same time, he was not hitting his developmental milestones exactly when he should. He did not want to eat from a spoon or put any kind of solid food in his mouth. So he started seeing an occupational therapist once a week. She addressed his problems with his motor skills and texture aversion. She also gave me things to do at home to help with his feeding issues. He continued to receive OT until he was about 3 years old when his motor skills were not delayed enough for him to qualify for the therapy anymore. His texture aversion was also improved enough that he was able to eat solid food by himself.
When he was about 4 years old and started “reading” books to himself, we noticed that his left eye pulled to the center when he tried to look at something up close. So we scheduled an appointment with an eye doctor to have it checked out. The doctor told us he had weak muscles in that eye and he could have surgery but there was only a 50% chance that surgery would correct the problem or we could put him in glasses with bifocals which would help him see up close better and help to strengthen the muscles in his eye and keep it from crossing. We opted for the glasses. Because of his hearing loss and slight speech delay, he has been receiving speech therapy since he was about 18 months old also.
In order for him to continue to get state sponsored speech therapy when he turned 5 years old, he had to be enrolled in school. We didn’t think he was really ready to start school, scholastically or maturity wise, but we really didn’t have a choice because my insurance wouldn’t pay for the speech therapy and we sure couldn’t afford to pay for it out of pocket. Kindergarten was a struggle. He couldn’t sit still and had no interest in learning anything the teacher was talking about. But he had a good teacher and we made it thru. At the end of the year, we all agreed that he needed to repeat kindergarten. Within the first month of this second year of kindergarten, the principle had requested a meeting to discuss him going to an alternative classroom because of his behavior and his inability to focus and do his work in a regular classroom setting. We agreed to give it a try because we were looking for anything that would help Jackson. He did very well in the alternative classroom the first year as far as his behavior but we just didn’t feel like he was learning and progressing the way he should be. We decided to see his doctor about getting him some testing to see if there was something else going on. His pediatrician referred him to a pediatrics developmental clinic for testing. After a full day of testing with a neurophysiologist, it was determined that he had ADHD. He was prescribed medication and within a couple of months he was back in a regular classroom making straight A’s.
While he was at the developmental clinic, they also did an MRI of his head to check on the calcifications that were identified at birth. The MRI showed the calcifications were still there but had not changed in size. The neurophysiologist determined that the position of the calcifications was probably the cause of Jackson’s cognition problem and his problem with math concepts. He is now getting extra help in math and doing great. At his last annual check-up with his pediatrician, we discussed how truly blessed we are that Jackson doesn’t have more complications than he does. For as sick as he was when he was born, he could have had a lot more complications now. I don’t know how we got to be this blessed but we are definitely grateful. I wouldn’t change one single thing about Jackson. He entertains me every day and challenges me every day and everyone that meets him falls in love immediately. He has a face that can truly light up a room.
- Shared by his mother, Cindy