Kieran's neonatologist does not think that Kieran was born with the virus, but rather that he acquired it sometime after birth. If this is truly the case, then that's a huge blessing - babies who acquire it in utero can suffer permanent disabilities. I found these facts on the CDC website and they astounded me. I have never even heard of CMV, and I pride myself on being well-informed & well-researched about things related to pregnancy. We've all heard of not changing cat litter while pregnant to prevent toxoplasmosis, but have you ever heard of CMV? Though Kieran didn't acquire it in utero, I want to share these facts because knowledge is power and pregnant women can take action to prevent CMV infection!
- CMV is the most common virus transmitted to a pregnant woman's unborn child
- Approximately 1 in 150 children is born with congenital CMV infection
- Approximately 1 in 750 children is born with or develops permanent disabilities due to CMV
- Approximately 8,000 children each year suffer permanent disabilities caused by CMV
- Congenital CMV (meaning present at birth) is as common a cause of serious disability as Down syndrome, fetal alcohol syndrome, and neural tube defects
So now that we know what's up with Kieran, here's the game plan. He was started on the antiviral gancyclovir via IV yesterday. When given to babies born with the virus, the course is 6 weeks, but since he acquired it later, the U of M doctor who specializes in infectious diseases & CMV will decide how long Kieran should be on it - preliminary estimates are 2-4 weeks. After that he can probably switch to an oral med, and how long he has to be on that, I don't know. Other plans: He will receive a brain ultrasound in the NICU soon, and will have an MRI of his brain at Children's post-discharge. The ophthalmologist will check Kieran's vision again (nothing new, since he'll be getting his vision checked regularly anyways.) And he'll have the standard newborn hearing test in the NICU before he goes home, but we will also do hearing screens at 6 months and 1 year, and probably each year after that for awhile.
Ending on a positive note - we figured out what's wrong with him, YAY! Kieran's WBC & platelet counts will hopefully go up now that he's being treated with the antiviral. His breathing has already improved in the past few days - he was taken off oxygen early yesterday morning and has been having great O2 saturations ever since, and no apnea episodes! He is back to nursing and milk feedings, which he loves! (He missed out on for 48 hours while they did the investigative work.) Today he weighed 4 lb 15.2 ounces - almost 5 lbs!!! Crazy! He was so alert today and really acting like a healthy little guy :) As for Kieran's kidney issues, it's highly unlikely they have anything to do with the CMV and they probably are just related to being a preemie or his enlarged kidney. Various kidney labs will be continue to be tested regularly while he's in the NICU and we'll follow up with the nephrologists at Children's at a later time.
One last thing: my mother-in-law Gale, who came up from Georgia and has stayed with us and helped with Maia and the house since Kieran was born, had to leave suddenly this morning, as her husband Jim's father passed away and she went to be with him. She will not be coming back, which is unfortunate, but what a blessing & a gift that she was able to be here for us for 5 1/2 weeks! Gale was an amazing support person in my early postpartum weeks, Josh was comforted by her presence, and Maia thrived during this crazy time thanks to her "GiGi." To Gale: thank you for your selflessness, generosity, love & support. We miss you already!