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Zach’s Story
"Our cCMV story began on September 8, 2001..."
Up until that point, my pregnancy had been extremely normal, no major complications. On September 6, we had an ultrasound that showed nothing abnormal and we scheduled my c-section for September 17th. (My first child wound up being an emergency c-section as he weighed a hefty 10lbs 2oz). The next day on September 7, 2001, I went into labor unexpectedly. After making one trip to the hospital and being sent home as my contractions stopped, we then turned right back around a couple hours later and drove the hour back to Gainesville as they started back again and were very close together.
I was admitted around one in the afternoon and we had to wait for the operating rooms as there were mothers ahead of me. So I received my epidural and all was well with the world.
Finally, a little before five, I was prepped and ready to go to the surgery room. My mom went in with me as my husband gets weak-kneed at the sight of blood, so he stayed with our two-and-a-half-year old son, Michael.
Once the surgery started, I started feeling a bit apprehensive. The baby's heart rate was a little elevated and then I heard the doctor say, they needed to get him out. As the surgery progressed and our doctor was getting his hands on the baby, I heard him say, "I've got green stuff here." Well, all of us "Know-What-to-Expect-When-You're-Expecting"- reading mothers, know that that means the baby has passed the meconium and that is usually an indication of stress. As soon as I heard those words, my life was never the same.
At 5:13 p.m. our son, Zachary Reynolds Cothron was born. When the doctor pulled him out he wasn't crying. I became more worried. They tried to hold him up for me to quickly see him, but they didn't get him high enough over the curtain and I didn't see him. I remember I kept saying to my mom, "I didn't see him. I didn't see him." And then it struck me that I still hadn't really heard him cry. And of course the doctor was working on me, and I was trying so hard to hear for him and it took a few more seconds before I heard his little, weak cry. I heard the nurse give the first Apgar score which was a one. As we know, we want an eight, nine, or ten so I knew that wasn't good at all. I continued to concentrate, but was losing the sounds of them taking care of him. My mom was trying to reassure me that he was okay. His cry did get louder and I finally heard the second Apgar score of six.
At this point, the doctor was finishing up with me and they had whisked Zach to the nursery and I was sent to recovery. I still felt very uneasy, but of course, was in and out as I hadn't slept in almost 24 hours. I finally made it to my room around six o'clock or so. The nurse came in the room and she didn't have Zach in her arms, as I expected her to so that I could hold him, and very matter of factly said, "There's something wrong with your baby."
I honestly remember feeling like time had stopped. You see it in the movies and all how your hearing kind of goes out and you're just focused on that one person saying those awful words. That's exactly how I felt. She was still talking and I was hearing her, but a lot of it wasn't registering. The most important words to me were his liver and spleen were enlarged and his blood count was off. I heard liver and spleen and I'm already, in my head, thinking, okay, who in here would be a good donor? Don't they do those kinds of transplants now where you can donate part of your liver and it grows in the other person and then all is well? And oh, gosh, I can't even remember what a spleen does. Is that the thing you can have taken out and still live okay? I'm already thinking, well, thank God we're in Gainesville, Florida with the University of Florida only minutes away and they're one of the top transplant hospitals in the country (or world, for that matter.)
The nurse, however, was still listing things that weren't right. He had a rash all over his body; it looks like something called petichiae. His initial blood work had come back and his white blood cell count was very, very low. He had only about 1/8 of what he should have. They were running more tests to continue to check on his liver functions and blood count levels and she would be back with more results later. And with that, she left the room. I remember, not necessarily losing it, but definitely the waterworks came. I'm still plotting on which of our family members could donate organs (I'm a problem solver at heart) and I remember asking my nurse when I could see him. I told her I hadn't even seen him yet because they didn't hold him up high enough in the surgery room. She said I'll be right back.
She came back a few minutes later with a Polaroid picture of Zach with, "Hi, mom" written on it. It was the first time I had laid eyes on him. I have often said ever since that moment, it was, for me, psychologically damaging to have never ever held Zach and thought he was perfectly fine and healthy.
The next few hours were very surreal. It became a game of waiting for blood test results and liver test results. They had finally brought him to me and we were able to bond and cuddle. To look at him, he actually looked perfectly fine, except for the rash. He just looked like he had tiny little spots. He was a healthy-sized baby at 7 lbs 15oz. He started nursing fairly well and wasn't having any problems with it.
The next hours and days were, I can't say a blur, but they definitely are somewhat foggy as they started to blend together. None of his blood work would come back with better results, we really didn't know what it was and then of course the tragedy of September 11, 2001. I remember sitting in the hospital holding my sick little boy watching it all unfold. When that atrocity happened we all just wanted to get home to our families and hold them and never let them go and I couldn't do that. I was stuck an hour away from my family and just held my Zach and cried and cried.
That day actually turned out to be my release date, although the doctor didn't even make it to my room until well after six o'clock that night. I remember him sitting in the rocking chair next to me, sighing heavily as we watched the horror continue in New York, Washington, and Pennsylvania. And then he asked, "Did they find out what's wrong with your baby yet?" And I realized I had no answer. We had been running tests for days, he was on antibiotics with no changes in any of his blood work and there just wasn't anything being settled upon. Even though I was technically discharged as a patient from the hospital, they let me continue to stay in my room as long as they didn't need it for another patient. The nurses said, even if we have to hide you in a broom closet, we're not going to keep you away from your baby. I was able to stay there until Friday September 14 with absolutely no problems, no other mothers having babies to kick me out of my room.
During the time we continued to stay there, we still had no answers. His platelets and white blood cells were dangerously low, his liver and spleen continued to be abnormal, but the head pediatrician finally said, we think we've got a couple of good ideas. One was some sort of blood disorder in which Zach was allergic to my blood or something crazy and if that were the case, there was a chance he might have to be flown to Denver as that is the only place that had the treatment needed for whatever that condition was. The other suspect was something called CMV. The doctor was hesitant to diagnose that however, because one of the major indicators of CMV is small head size and low birth weight, neither of which were a problem for us. I remember that day because it was the first time I was brave enough to finally ask him The Question. The Question I had avoided for days and thought if I didn't ask it, then it wasn't an option. I finally asked, "Is my baby going to die?" If you've never had to ask that question and firmly believe it's a distinct possibility, you have lived a blessed life. His response was honest and fair, but he basically said something to the effect of, we're going to get a diagnosis and we're going to treat it.
The next day was September 14, 2001. The nurse had to wake me up early, around six o'clock and tell me Zach had had a setback and had needed to go on oxygen. His oxygen saturation level had been borderline all along, but it finally dipped below where it needed to be and he just needed that extra help. Just when I thought I couldn't get any lower, I'd sunk down a little further.
A couple hours later the doctors came in and had me sit down and said they finally had a positive result and knew why Zach was sick. It was congenital CMV.
I remember telling the doctors, oh, thank God. We finally knew why he was sick. I was ready to rock and roll. It's a virus. No problem, we just give him some medicine and we're on our way. Why on earth did they need me to sit down to hear that news? And I was relieved. Oh, I was so relieved, because for an entire week we had been agonizing over what was wrong and what could we be doing to make him better. Now we had an answer. Now we knew what it was. But then they started explaining. These initial problems were only the beginning. We had some serious possible issues we had to address. It wasn't as simple as we'll get some medicine and head safely home.
The first major necessity was to move him from the special care nursery at North Florida Regional and send him by ambulance to Shands at the University of Florida to be put into intensive care. The arrangements were being made as we were speaking. I was frantically getting my parents and husband on the phone trying to get them there so they could help pack me up and move me to the Ronald McDonald House. Things were starting to move quickly. And they needed to, we had Tropical Storm Gabrielle moving in on us and we needed to get it all done fast!
Thus, our stay in the NICU began. And the tests. My goodness the tests. He was seen by ophthalmologists, his eyes checked out okay. He was still on the oxygen, that continued for about a week. At the time of our admittance to Shands, our doctor, who happened to be the head of pediatrics at the University just so happened to have a very good friend who was one of the head doctors at the CDC in infectious diseases, and he was getting advice as to what our course of treatment should be. They recommended treatment with Gancyclovir, administered with a pic line, a very tiny little tube inserted in his thigh that went straight to his heart to deliver the medication. We were told to expect to be there at least six weeks.
He was taken for CAT scans, and after initially reading one incorrectly, we were finally given the news that he didn't have any calcifications and we'd really dodged a bullet with that as that can lead to so many more complications than what we were already dealing with. Zach did have to have a blood transfusion at one point because although his virus levels were slowly dropping, his platelets and white blood cells continued to stay very low and the gancyclovir suppresses the bone marrow, so then it was starting to affect his red blood cells, as well. He developed an ulcer in his colon at one point, but the gancyclovir was really the only treatment, so that complication was left to resolve itself, which it eventually did. Zach failed his initial hearing screenings and follow up was imminent once we were finally released from the hospital. After three weeks on Gancyclovir, I had arrived at NICU, nursed Zach and they yet again took some more blood to check the virus levels. The doctor said, "Go get some lunch, we'll have the results when you get back, but we're about halfway through the treatment plan, so hopefully the virus level is continuing to move down." I went down and had lunch, the same boring, tasteless lunch I'd been eating for a month because at that point, all food tasted the same. I was in a fairly depressed state of mind and really didn't care at all about anything but getting my baby healthy enough to come home. At that lunch I spent the very last dollar that had been given to us by our church family from a love offering one night at a church service. I had used every bit of it to help pay for the gas and food at the hospital while he'd been in the NICU.
Upon my return to the NICU I was met by the doctor, fully expecting to hear he was still slowly improving and our course of treatment was following along nicely. To my shock he said, "How do you feel about going home?" I thought he was kicking me out of the NICU! Nope. Zach's virus level showed absolutely no virus in his system. I couldn't get him packed up fast enough. MIRACLES DO HAPPEN!
We became involved in the Early Intervention Program and began occupational therapy, physical therapy, and at about a year speech therapy was added. We found at five months that he did have a profound hearing loss in his left ear and a mild loss in his right. He was delayed in most of his milestones as he has hypotonic cerbal pasly, meaning he's very floppy and loose-jointed. And while his milestones were all delayed, he has caught up fairly well and he looks like any other kid, just clumsy and has poor balance. The hearing in his right ear appears to slowly be deteriorating and he does wear a hearing aid. Zach is an extremely smart little boy with some social difficulties and immaturities, but we've been blessed to have wonderful, supportive friends and family, doctors and therapists who love Zach for who he is and expect him to be no one else but himself. He does have ADHD and some sensory integration issues, to include very poor sleeping habits, although they have improved greatly in the past year or so. Zach also has the sweetest, purest, most innocent heart and soul of anyone you've ever met. He has never questioned who he is; he's perfectly happy and expects that we all should be as well.
And while I can't honestly say that given the chance if I could determine the day I contracted CMV during my pregnancy and turn back time and warn myself that I wouldn't do it, I can say that the roller coaster that has been our life over the last eight years has been very difficult and trying and frustrating, but also rewarding because he has taught all of us more about who we are and what we can and should do with our lives, I can't imagine what life would be like without our Zach as he is.
- Shared by his mother, Christy