Danny’s Journey

At 32 weeks pregnant, I went in for an ultrasound to follow up on a marginally low placenta they had seen at 20 weeks. This is a relatively common thing, and over 95% of them resolve by 30 weeks, so I was more excited than anything at an opportunity to see the baby again! My second child, I felt a little like a pro at pregnancy, and thought I had everything in hand.

 

During that ultrasound, the tech noticed that ventricles in the baby’s brain were dilated – that is, larger than they ought to be. They were not obscenely large, but it was still a curious finding, so I was referred on to perinatologist for another ultrasound to look at the findings. He said that they looked “large, but not horribly so,” but he said he was concerned about something else: he believed that the baby’s corpus callosum, the “bridge” between the two sides of the brain, was not fully developed. He also noted that my fluid was on the low side of normal.

 

Over the next weeks, I was submitted to weekly ultrasounds to monitor my fluid levels, as well as another comprehensive ultrasound scheduled for 36 weeks. I was offered a prenatal MRI, but he warned that with the baby’s position and size, there was a chance it would not be conclusive either, so I declined. We would find out when he was born – and I was told he could still come on his own time, as any issues with the corpus callosum would not impact his birth in any way.

 

The weekly fluid ultrasounds went well, as I realized I probably wasn’t drinking enough water. My fluid increased by leaps and bounds, well within normal range! At 36 weeks, I was feeling quite positive. The day before the ultrasound, however, I started leaking; I would stand up and fluid would “gush” a little. I knew this could be normal, though, as part of losing the plug that holds the baby in – which could be lost anywhere from 36 weeks on and still have a full term baby. Around 2am on Tuesday morning, there was a little bit of pink coloring it, and I worried a bit but waited for my afternoon ultrasound to find out what was up.

 

The findings weren’t great. The baby was suddenly measuring a week or two behind, and I had lost pretty much all of my water without it officially breaking. I was admitted to the hospital and, that night, Daniel was born via c-section.

 

Danny came out wide eyed and alert, and gave a healthy cry, but he was covered in little red dots and had an overly large stomach. By the next morning, we knew this was a result of a low platelet count in his blood (spontaneous bleeds under the skin) and an enlarged spleen. A few days later, he was diagnosed with Cytomegalovirus, or CMV. This was also the cause of his enlarged brain ventricles. An ultrasound proved the perinatologist wrong, though: his corpus callosum was fully developed.

 

Treatment began when Danny was 4 days old, with a drug called Gancyclovir. He received this once or twice a day via IV for 6 weeks. In the early days, he also received numerous transfusions as his platelet levels fluctuated, and he had to be put onto ventilation briefly as he learned how to breathe. At first, he was on an IV, then a feeding tube, before finally weaning onto bottles. This was par for the course for a 36 weeker, and he went on to be an incredibly enthusiastic eater.

 

Of his time in the NICU, Danny had one major hiccup at around 4 weeks: a bacterial infection. His white blood cell count had bottomed out, probably as a result of his treatment, and two forms of bacteria were growing in his blood stream. They caught it early and knocked it out, but they suspended his CMV treatment for a week, leading to an almost 8 week hospital stay.

 

On May 4, Danny came home on a second treatment – Valgancyclovir, the much weaker oral cousin of the IV treatment he had undergone. We entered a world of twice a week blood draws to monitor his platelet and blood cell counts and weekly visits to the doctor, all while Danny had to be kept away from large indoor crowds “just in case” his white blood cell count bottomed out again.

 

Among the risks of CMV are hearing loss, so while he passed his newborn hearing screen, they set a follow up in early May. When he was unable to pass this test, he was referred to the hospital’s audiology department. On May 21, we went in for the test, and after 2 hours of extensive testing he was diagnosed with profound hearing loss in both ears.

 

After a long build up to confirm the loss, and a month long hearing aid trial, it was decided that hearing aids are not going to be effective for Daniel. Not unexpected, with the degree of his loss. On January 27, 2009, he received bilateral cochlear implants, which were activated on February 16. His journey to hearing began in earnest.

 

It’s hard to believe that was all years ago. Today, life goes on – Danny is a CMV super star, though he certainly has his challenges. Along with his deafness, he has low muscle tone, and we strongly suspect he is somewhere on the autism spectrum…though since he is already receiving all the services available, we are not (yet) pursuing a diagnosis. He is a charming, loving boy who enjoys playing on the iPod, giving kisses and high fives, chasing his brother around, and listening to music. He doesn’t talk or sign, but he has a huge understanding of spoken language, and he communicates in his own ways. Above all else, he has a sense of humor that keeps him – and all of us – laughing often and loving much.