My first grandchild was born on September 5, 2017, and she passed away on September 11, 2017 from CMV. My son Clayton, his fiancé Brittney and the rest of the family are still in the grieving process.
Throughout their pregnancy, everything was as perfect as perfect can be. I could not have asked for a better person to be carrying my grandchild and take care of her like she did. Brittney took very good care of herself and Callie. Every time they went to their doctor’s appointments, all was perfect. Baby was right where they wanted her to be, good weight, good size: All of it, perfect.
Until Brittney called me about 4 p.m. on September 5th. I could tell in her voice that something was wrong. I asked if she was OK and she said no. She told me that she had not felt Callie move in about two days and she was concerned. She didn't want to go to the hospital in case she was just overreacting. My son convinced her, and I told her I would come and take care of her other two children. Yes, she has two healthy boys. I left the store and went to their house to pick up the boys so that they could be on their way. I was just thinking I would be there for a little while and everything would be OK. That thought could not be further from the truth.
They called me about an hour later and they were getting ready for an emergency C-section. They had the baby on the monitor and could not get her to move either, so they needed to bring her into the world quickly. I told them I would have someone come and get the boys from me and I would be there. She was born at 9:54 p.m. (In a later conference with the doctors, we found out that she was not breathing when she was born.)
They did compressions for 24 minutes. They were getting ready to call it, and on the 25th minute they got a pulse. I try to believe that was because we were all supposed to meet her, to have six days with her. So that her mother and father could be with her together. She was alive, but barely.
When my son came out to update us I could tell by his face that it was not good. He told me that she was bad; his face was just filled with pain. I went back with him to see her. They were getting her ready for transport to take her to Children’s Mercy hospital. The doctor introduced himself, shook my hand, and told me that her odds were not good.
This was the first time in my life — and I am 53 years old — that I heard the acronym CMV and the word cytomegalovirus. I was like: “What the hell is that?” I looked at my son and didn't know what to say.
In my head I was thinking, "Why are you saying that? She was just born, she is going to be fine." I heard the team talking about all of the things that they had done, it was awful. I myself was in denial at that time.
OK, now remember, my future daughter-in-law Brittney is not even awake yet and knows none of this. She wakes up and Clayton is with her and he has to tell her all of this. Of course, she also is in denial because NONE of our family members had ever heard of this. NONE of us. So out of two people’s families and friends, and each of their families and friends, not one person had heard of CMV. NOT ONE! So, of course, we are all googling it to try to find out anything we can.
Because Brittney had an emergency C-section she had to stay at the hospital where she was at and the baby went to another hospital. She got to see her for about one minute since time was so critical. So not only did this mother and newborn have to be separated, but this couple had to be separated from each other and deal with this separately. That was terrible.
My son and I went to Children’s Mercy with his baby and stayed up for 36 hours by his baby’s critically ill side. We were not really being told anything other than she was really sick. We were to meet with the doctors the next day at around 9 a.m. Here comes the bad news round 2.
My son and I were standing by Callie’s bedside and met with about six doctors who told us the many things that were affecting this newborn. The list went on. They explained more to us about CMV, but we really didn’t understand how or why this happened.
My son then asked the question: "Is my daughter ever going to be able to live a normal life?" The doctors’ answer: “No.”
Round 3.
Now in the room for families who are staying at the hospital, I am just sitting on the floor as my son is crying uncontrollably. I don't know what to say. Brittney doesn't get to be with her daughter for three days as she watches and listens on a monitor. When she does get to see her for the second time after that one-minute meeting before she was taken away, Brittney has so much hope as she doesn't know the fullness of how sick her daughter really is. The rest of us know, but like her, we still have hope, until Saturday.
The new mom and dad are struck with heartache for six days. In the final conference, Clayton and Brittney go in to talk to the doctors alone this time. We tell them we will come in if they want us to. They came out to get myself and Brittney’s mother, it was at that time – that moment – that I knew this was bad. This virus is taking our beautiful little baby. Why? How? Why us? Why her? Why them? So many whys. They were always told everything was perfect; Brittney did everything right.
When we went in and heard the rest of the news, round whatever it is now, they were told she is never going to be able to do anything on her own: eat, walk, run, drink, hear, see, nothing. CMV has completely affected this baby’s entire body from head to toe. That is how bad this virus is. And still, people do not know about it. Are not aware of it. Have never heard of it. Why is there not a vaccine? Again, more whys?
So, on Monday September 11, 2017, a day that most all of us remember solemnly anyway, is now a different day for Clayton, Brittney and our family. Now we have another reason to be sad on this day. The entire family was with them on this day. We waited until they made the decision to take the breathing tube out. That was their decision, not anyone else's.
And after they did, with all of us in there for the first time, Callie Rose made a noise. You talk about hard? Oh, my goodness. She lived for almost four hours after that, taking those last breaths. Again, very hard. She was so beautiful. Clayton and Brittney took her in the end by themselves to say goodbye to their special angel.
Then that was it. She was gone and all of our lives, especially my son and his fiancé's lives, were changed, forever.
I want to get awareness out there. I want to tell anyone and everyone about this. This is the first place I am sharing my story, but it is the beginning. I don't know how or what I am going to do, but I am going to do something to get this out there. It is a silent but deadly virus and I want people to know. I want people to be tested, because we can. We all can. I don't want Clayton and Brittney to ever go through anything like this again. I hope and pray they decide to try again, but I don't know if they can, mentally.
Clayton’s father and I both believe they are much stronger than we would have been at their young ages, 24 and 27. We just hope that they can survive. It is going to be a long road for all of us, but especially them.
- Shared by her grandmother, Tammy