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Kaitlyn's Story
"I was thrilled when an ultrasound at 19 weeks indicated that we were going to have another girl..."
I was so happy that my older daughter would have a sister so close in age to play and grow up with.
The ultrasound also revealed something called echogenic bowel syndrome, a situation where the bowels show up bright white and look like bone. We were told that it could be caused by Downs Syndrome, Cystic Fibrosis, or an infection; but that usually there is no known cause and the baby is born healthy. We chose to do blood testing for Downs Syndrome and Cystic Fibrosis, but opted out of an amniocentesis, feeling that the risks of infection were too high. Both tests came back negative, and the baby appeared to be growing and developing just fine, so we didn't worry too much. I was told to come back every 3 weeks, starting at 26 weeks, for ultrasounds to check on the baby's growth and general well-being.
The ultrasounds were never simple. There was always something wrong. Usually something minor, but always something. My amniotic fluid was always low, sometimes dangerously low, and the baby had extra fluid around her heart (pericardial effusion). I was admitted into labor and delivery twice, once at 30 weeks and once at 34 weeks, due to "failed" ultrasounds and suspected fetal distress, but both times I was discharged after a few hours of monitoring. There were also issues with the blood flow to the baby from the placenta, it was often low, indicating that she wasn't getting all the blood and nutrients that she needed. At 36 weeks an ultrasound revealed an enlarged spleen, this was the first clue that the baby probably had some sort of an infection.
By the end of my pregnancy I was going to bi-weekly ultrasounds and wondering if my baby was going to survive. We had no idea what was going on.
I went in for yet another ultrasound when I was 37 weeks along. We knew there was a good chance that I would be delivering this day. The ultrasound found her spleen even more enlarged, more fluid around her heart, very low amniotic fluid, and a complete reversal of the blood flow. It was time for her to come. I was taken to labor and delivery for an induction. Before they could actually start the Pitocin, her heart rate plummeted. My midwife told us that there was a good chance we could end up doing a C-section. A few minutes later her heart rate dropped again and before I knew what was happening, a team of doctors were in my room. I was told that there was no way the baby would ever make it through labor and that they needed to do a C-section immediately. They prepped me as quickly as possible, always keeping an eye on the heart rate, and within just a few minutes our little girl, Kaitlyn Grace, was born.
They showed her to us briefly before handing her over to a team from the NICU. We heard sounds from her occasionally, but not the healthy cry that you would expect from a full term baby. After working on her in our room for a time, they took her to the NICU and placed her on oxygen. I was finally able to see her a few hours later. Her nurse told us that they suspected that she had been infected with a virus called Cytomegalovirus and they were just waiting on testing to confirm it. Kaitlyn was officially diagnosed with congenital CMV the next day and was started on ganciclovir (an antiviral) when she was 3 days old. Kaitlyn was born symptomatic; she had thrombocytopenia (low platelets-she received 4 platelet transfusions in her 2 week hospital stay), an enlarged spleen, a slightly enlarged liver, a low birth weight, petechiae (small red spots caused by burst blood vessels due to the low platelets), and blue berry muffin spots (small bruises) on her lower back. We were told of the risks associated with CMV; deafness, blindness, cerebral palsy-the list went on and on. We were told that Kaitlyn was very sick and that there was still a chance that she would die. But Kaitlyn is a fighter, and within two weeks we were able to bring her home.
Her first few months were difficult. She became severely anemic and neutropenic due to the valganciclovir (the oral version of ganciclovir) and had to have two blood transfusions. Her spleen was enlarged for months and she had significant reflux and was very colicky. Her muscles were very tight and we began physical therapy at 3 months. We spent those months overwhelmed, tired, and scared about her future.
Today Kaitlyn's future looks very bright. Her health is stable and she has made great strides in her development. She has unilateral hearing loss (moderate/severe loss in right ear, normal in left) but seems to compensate well. Kaitlyn has delayed gross motor and language skills but has recently started sitting and is starting to "talk". Her favorite thing to say is, "oh uh!" Her vision has been unaffected. We still don't know what the future holds for her but we do know that it will not be defined by CMV. Kaitlyn is a sweet, happy baby and we feel so grateful to have her in our life.
- Shared by her mother, Kim