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Layla's Story
"My name is Kelli and I'm 29 years old and from Fargo, ND and my daughter, Layla died from the effects of being born with congenital CMV that she caught from me..."
I suppose that age really doesn't matter, but as you read in the research, most people have been exposed to, or have had CMV by the time they are 30. Well, being pregnant and turning 29 during my pregnancy, I didn't have CMV until I caught it while pregnant with my daughter, Layla. Up until my 20 week ultrasound, my pregnancy was going fantastic. I didn't have much for morning sickness, and I felt pretty good considering everything. I had a 1 1/2 year old son at home so during that first trimester, I never thought anything was wrong or out of the ordinary when I was tired and fatigued. I was working full time and chasing after a busy boy and in my first trimester, so I thought it was par for the course.
At my 20 week ultrasound in May 2011, the tech had questioned if I had my dates correct, and trust me, I'm a planner, and I had this pregnancy planned out to a "T". I knew I wanted to be due at the end of September so that I could take 12 weeks off during the most stressful time of my job as we thought it would be our last child and my last chance at maternity leave. The ultrasound tech said that my baby, a little girl, was measuring small and that's all that was initally said. I'm only 5'3" so the thought of her being "small" wasn't alarming to me. A couple days later the nurse from my doctor's office called and said that my daughter had echogenic bowel. I had never heard of it before and asked the nurse what that meant. She didn't know off hand and so while she was looking it up with her resources, I started looking it up on google. Yes, google of all places. The information that popped up wasn't anything good, and I sat at my desk at work reading about how my daughter, who wasn't even born yet, could die from all these possible diseases. The nurse said we could see the perinatalogist in two weeks and they would help us find out what was going on. When I knew something was wrong with my child, I knew I couldn't wait two weeks to find out what was going on or why, so I called back and asked if I could get into someone sooner. They called back and said I could get into a doctor in Sioux Falls, SD the next day.
My mom came down to watch our son as my husband and I hopped in the car and drove the three hours to Sioux Falls hoping and praying that they'd find our daughter was fine and that the ultrasound was wrong. We first met with the genetic counselor and he gave us all the percentages of it being a maternal infection, cystic fibrosis, or a tear in my placenta, and so forth. After meeting with him, we then had a high level ultrasound and once again, I was asked if I knew my dates, which I did. I knew my last period and when she was conceived, that is how thorough I am.
The doctor then came in and he did his own ultrasound exam on me. He pointed out how her head was measuring 2 weeks smaller than her gestational age, and there were some white spots in my amniotic fluid, which he thought may have been a tear in my placenta that leaked blood into the amnio, and my baby could've swallowed some of it and that would possibly be why her bowels were showing up as white as bone. The doctor said that we could find out for sure what was going on with an amniocentesis, but since he wasn't sure why my amnio was showing up spotted, he said I would possibly be at a greater risk of miscarrying, and thus we opted for the blood tests.
They tested me for the TORCH infections and they tested both my husband and I for cystic fibrosis. It took a good week and a half before the results came back, and when they did, I was once again at work. The nurse called and told me we didn't have cystic fibrosis, and that I tested positive for a past and recent exposure/infection of CMV. I had never even heard of CMV before that day. The nurse asked if I remember having a fever, swollen glands, being tired and achy, and like I said...I was pregnant with a 1 1/2 year old at home, being tired and achy wasn't anything uncommon to me, so I didn't pay any mind to it. I then searched like a mad woman for everything I could find on CMV and hoped and prayed that I fell into the "reactivated" group for the CMV infection so that there would be a good chance Layla would be ok.
Once my test results came back positive for CMV, I started seeing a fetal medicine doctor every two weeks, and at each visit, there was an ultrasound to check for growth. At our appointment at 22 weeks, the perinatalogist saw that the ventricles in Layla's brain were enlarged, and Dr. Van Eerden was questioning the structures of her brain, specifically in the back. He wasn't sure if it was CMV or if it was possibly Trisomy 13, Trisomy 18, or Trisomy 21 that was causing the structural differences, and he recommended an amniocentesis to pin point what we were dealing with. It was a painful procedure...I couldn't even watch. I just laid there on the table trying to breathe through it while my husband held my hands. It took almost two weeks to get the test results back - it was nerve wracking.
The test results came back that it was NOT a genetic condition, Layla's amniotic fluid tested at millions per parts of CMV. A high viral load is anything over 2000 per parts, and here Layla was beyond that - it was heart breaking. We then knew Layla caught congential CMV from me - I felt like I had given my unborn daughter a death sentence, and it is still a guilt/burden I carry with me every day of my life.
From that moment on, every time we went in for an ultrasound we would ask "where are we at?". At first her head/brain were measuring two weeks behind, then it became three weeks, then four, then towards month 8 of my pregnancy it was six weeks behind. The doctors told us that if Layla's heart rate or activity level dropped off, they would take her as it meant she was struggling with the infection. A couple times I had to go in for monitoring and they'd do a biophysical profile to check on her. Each time Layla would fail the biophysical profile for the breathing portion of the test. We asked if that meant she wouldn't breathe once she's born and we were always told "no, that has nothing to do with it, it's more of a milestone indicator". Everything we had read about children with CMV prepared us for the idea of being parents of a child with mental and physical challenges, and we accepted that and knew we could handle it and we would do our best.
On August 31, 2011, my husband's birthday, I gave birth to my beautiful daughter, Layla. She arrived after 4 pushes and was handed over to the NICU staff in the delivery room. I heard her make one sound and they started working on her. I couldn't see a thing - I just laid there begging "please breathe Layla, please breathe, please cry" and she didn't. The OB doctor finished me up, and the NICU staff rushed Layla to the NICU, and there, for the next 2 hours I was left all alone. I had no idea what was going on with Layla, if she was ok, how much she weighed, how long was she, her APGAR score, nothing...I literally knew nothing other than I had a baby girl with lots of dark hair. My husband and the neonatalogist nurse practioner came in later and went over everything with me. Layla's liver enzymes were high, her liver and spleen were enlarged, she couldn't breathe on her own and was on a vent, and they were doing her sepsis work up. I could hardly wait for the epidural to wear off so that I could finally go see and touch my daughter.
I finally walked into the NICU where they had her in isolation because of the CMV virus, and saw my tiny little girl, she weighed in at 4 lbs 13 ounces and was born 3 1/2 weeks early, with these long fingers, long feet, lots of dark brown hair, chubby cheeks, my nose, my ears, my husband's eyes and his mouth laying in this isolet. The doctor asked us if we wanted to keep her on the vent, or as she put it "let nature take its course" and we said "keep her on the vent". Afterall, she was only 3 hours old - we wanted to give her a chance, we wanted to get to know our daughter, to hold her and kiss her.
That started the longest and hardest 2 weeks of my life, but I will treasure them as they are the last and only two weeks we had with our little ladybug, Layla. The doctor's recommended we start ganciclovir, which Layla would need twice a day for two weeks, so we agreed. The drug destroyed her white count and so she needed platelet transfusions almost every other day. Layla couldn't breathe on her own, she basically rode the vent the entire time. Layla had the deck stacked against her from the word go: her kidneys were structurally abnormal, liver inflamed and enlarged, spleen inflamed and enlarged, heart was fine, lungs were physically fine, eyes were physically fine, but she didn't have a full functioning brain. A normal human brain has hills and valleys and looks like a walnut, Layla's was smooth and there was a lot of fluid making up what wasn't filled with grey matter. There wasn't anything in her brain that would tell her to breathe so she would need a vent or a trach for the rest of her life and she didn't have a gag reflex.
The medical staff laid everything out on the table for us, Layla would never walk because she was so high tone, she would never be able to eat, she would need a nurse 24 hours a day because of the lack of gag reflex, she could choke on her own saliva, she would need the ganciclovir almost around the clock to keep the CMV from coming back, platelet transfusions to rebuild what the ganciclovir didn't destroy. It basically boiled down to us that our daughter wouldn't have a life, she would have an existence and that's not what we wanted for her. From that moment on, we treasured every sleeper she wore, every story we read to her, every moment we got to hold her, or touch her hair, or kiss her cheeks and forehead, and hold her hand when it wasn't in a splint because we knew the end was near.
God called our daughter home on September 12, 2011 after giving us 13 days to get to know her and to show her how much we loved her. We will never forget our daughter and the lessons she taught us, we are just frustrated that we never heard of CMV before being diagnosed with it. I am especially frustrated because as a pregnant woman, you get tested for hepatitis and HIV when you're pregnant, all of which I KNOW I didn't have, but yet I never got tested for CMV until it was too late and I didn't know I hadn't had it before getting pregnant this last time. I didn't have it when I was pregnant with my son, so to all of a sudden catch it, and watch it rob me of my child is awful.
In the state of ND we are the third, THIRD documented case of CMV. My sister is trying to get pregnant and I have asked her to get tested before trying to conceive, and when she mentioned this to her doctor, her doctor said "why would you get tested for that, it's so rare, it never happens". When she said "well my sister just tested positive and her daughter has it", the doctor still didn't think it was necessary to test my sister. I have since begged my sister to get the blood test and even have offered to pay for it. Even my son's pediatrician told me, "Kelli, do you know how rare it would be if your child were to have CMV, I wouldn't worry about it.", well, now I do worry, because I had a child with CMV and it's because of CMV I no longer have that child.
I wish more medical staff knew about it, I wish more women knew about it. I can't help but keep replaying my whole pregnancy and think of the would've/could've/should've, but I didn't know. I was just trying to be a good mom to my son...I had no idea that him taking a drink off my glass or anything like that could've caused me to catch a virus that could put my unborn child at risk.
My only hope is that more medical personnel will learn about CMV, that it is real, and how severe it is, and will talk to their patients about it, rather than just brush it off. If there was something I could do personally, I would do it so that I would know my daughter didn't die in vain.
- Shared by her mother, Kelli