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    Posted February 3, 2014 by
    cmvmom99
    Location
    clifton heights, Pennsylvania
    Assignment
    Assignment
    This iReport is part of an assignment:
    Living with a rare disease?

    CMV MOM, 14 years later....

     
    After reading the story of Greyson and His Mother, it outrages me that still in 2013, CMV is not discussed, at all during a routine OB GYN pregnancy visit!!! In 1999 , I was 19 years old, pregnant with my first child, I was young but excited. At my 20 week u/s scan my son showed an ecogenic bowel, I was told I needed to be tested for cystic fibrosis, toxoplasmosis> all which I knew about in great detail...Then they said Oh, and also CMV. WHAT??? I had read multiple pregnancy related books, I prided myself on quitting smoking, eating healthy, and taking every preventative measure I could take to ensure a healthy baby. So, naturally I was devastated, and even then not given much information. So, At home, of course I go online to research- I was completely and utterly sad, angry, scared, and in disbelief! I had been working in child care, and yes i had typical flu like symptoms at approx 9-10 weeks, 1st trimester. The endless disabilities this disease could cause were horrifying. They asked if I wanted to terminate, being young, naive, hopeful, and in utter denial, said adamentaly NO...Even though all was telling me awful things, somewhere in my mind, i really thought my son would be fine> I even had u/s scans every three weeks with a perinatologist to check on his growth, fluids, brain ect, and EVERY time I was told that everything LOOKED FINE, no evidence that the CMV had affected him...So basically i was being reassured that my son was going to be born healthy. I was hesitant but believed the Many doctors. At delivery they had a Neonatal Team as a "precaution"...Red Flag #1...Why? If my scans showed up normal, why were there 2 neonatal doctors, a team of nurses, and a bed set up for emergency procedures when my son was born? He was a healthy 6 lbs 10 oz, 21 inches long, but they whisked him away from me immediately stating at the time that he was tachycardic, and had prob swallowed fluid, BUT all would be JUST FINE. After several hours, they took me to see my newborn son, and i was not prepared for what was to come at all. The doctor brings me in his office to tell me that my son had a condition called eventration of the diaphragm, and appeared to have low muscle tone which combined is RARE and DEADLY bc in cases of diaphragm issues, most cases the MUSCLES in the chest take over breathing responsibility. The doctor being unfamiliar with the diagnosis , had then told me my son excreted CMV in his urine and these problems most definately caused the issues although he wasnt presenting "typical" CMV infection symptoms. They kept him in their NICU for one month with oxygen, NG tube for feeds, and IV's , Meds et. He was then transferrred to a pediatric hospital for children, DUpont. At Dupont they literally tested him for each and every disease genetic and congenital, all test showing normal results. Let me tell you , the first year of his life was HELL on earth...I was devastated bc his prognosis was not good, death worst case, a cripple who would struggle to breathe the rest of his life, bc there was no "fixing" his abnormalities. Now 14 years later I literally have a medical miracle. God most definately intervened on my sons behalf>religious or not, NO MAN< OR DR could explain how my son survived, let alone is now a pretty , "normal" healthy ATHLETE despite his low muscle tone! And his diaphragm which was surgically tied down on one side, and also a membrane, not a muscle like us, somehow works with his chest to breathe. Now he is very thin and dx with failure to thrive for which he drinks boost to supppement weight gain, and sleep in a porta lung at night to rest his muscles that control his respiratory actions, and he would be suseptible to complications of the flu or pneumonia...BUT Im BLESSED that he has come so far against all odds. My problem lies with the fact that 14 yrs ago, there was no education, knowledge of this COMMON devastating virus that can cause so much damage to a child AND there is STILL NO EDUCATION< KNOWLEDGE OR PREVENTION OFFERED!!! How many babies have to die, or live severly disabled the rest of their lives before this disease is right up there in the books with toxoplasmosis?????? How come there is MEDICATION , but its not routinely OFFERED? It ANGERS me so much!!!!! No one knows what the heck it is is when you mention it FOURTEEN YEARS LATER! How many of us could of and would have taken more precaution? Would have benefited from medication? These are LIVES we are talking about, being destroyed , not enough effort or research, and when we ask the proffessionals WHY? We are told bc its SO RARE, its unecessary!!!! REALLY? Tell that to our children that are affected with this horrendous virus!!!

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