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Leah Nicole’s Story
"Hello, my name is Erica Layne. I am from South Pittsburg, Tennessee but had my daughter in Chattanooga, Tennessee..."
My daughter, Leah Nicole Mitchell, was diagnosed with CMV when I was about five months pregnant after my amnio. I had no idea what CMV was. What was even more strange, there were two other women at my specialist diagnosed with CMV. We were due days within each other. We each went through percutaneous umbilical blood sampling (PUBS) of an Experimental Drug (name I can't remember at the time) and three or four IV's of the drug. The drug had a 50/50 chance of minimizing some of the effects of the symptoms. During my second PUBS, Leah heart rate decreased, and they induced labor. Needless to say, the drug had no positive effect and we got the bad news.
At the time of my pregnancy, my specialist told me I could be prepared for Leah being deaf. I was totally unprepared for what the doctor was getting ready to tell me.
Leah was 3 lbs 13 oz. She has Lissencephaly (smooth brain), Microcephaly (small head/brain), Intracranial Calcifications, and her Cerebellum is underdeveloped. She is on oxygen all day every day (1.5 liters). She was sent home on 5 liters of O2 and has made a very good improvement with her apnea spells. She has probable optic atrophy (vision) and we are unsure of her central auditory functions (hearing). When she was discharged from the hospital (with Hospice) she was feeding through og-tube. I then taught her how to take a bottle, but over the past summer she was throwing up everything and lost a total of 4 lbs. So we got off of Hospice, and went to Vanderbilt.
Now we are seeing GI, Pulmonologist, Surgeons, Neurology, and Radiology very frequently now. Leah had a swallow study and was aspirating her food and she has severe acid reflux and that was the reason for her throwing up all the time. September 23rd was Leah's surgery this year for her MIC*KEY button and Nissen. She gags a lot from the Nissen, but is a lot healthier and a lot more active that her weight is up and she is getting nutrients.
Leah was sent home on Hospice and wasn't supposed to make it to be a year old. Leah is off of Hospice and trying to talk, her vision seems a lot better, and she is 16 months old now. Miracles can happen. I was told by Leah's doctor when she was first born that teenage girls that make mistakes have to suffer the consequences. I do not feel like I made any mistakes.
I attend college in Tennessee and manage school and motherhood just fine. I feel like I was meant to raise a disabled child, and Leah is the biggest blessing I have ever received. Watching how strong a baby so sick can be, makes you grateful for everything and so much stronger yourself.
- Shared by her mother, Erica