"My first daughter was born in 12/94, I miscarried in 1/96, and a few months later happily became pregnant again..."

During my first trimester carrying David, I had excruciating earaches and I threw up a lot. I went to a few doctors about my ear because they all said nothing was wrong with it - no infection, nothing punctured. The last doctor I went to said it was 'pregnancy related' - it would eventually go away. And it did - by the second trimester I was fine. This 'earache' must have been when I contracted CMV...I had a toddler, and I worked in our infant/toddler nursery at my church a few times a month, but no one ever tested me for CMV nor had I ever heard of it.

Besides carrying very small, everything seemed okay with my pregnancy. But in my 3rd trimester an ultrasound showed that blood was impeded going into the placenta so I was put on limited activity. Another ultrasound a few weeks later showed a knot in the umbilical cord and my OB scheduled frequent tests to monitor the baby's reactionary times. Two weeks later an ultrasound indicated more resistance with the blood flow going into the placenta and declared I was having placenta failure and that it had less than two weeks...which meant the baby had to be delivered three weeks early.

Fortunately an amniocentesis (ouch!) showed the baby's lungs were developed. For two days they administered cervical and on the third day they administered prolactin at 7:30 am. My water broke at 2:30 pm, by 4 pm I was 1 cm dilated, at 4:30 1.5 cm dilated, and they didn't check again until 10 pm! By which time I was 9 cm dilated and it meant it was too late to get an epidural...to this day my husband can vividly recall the look of horror on my face when I came to this realization! Fortunately with only 3 quick pushes the baby was delivered 16 minutes later - by the nurse! The umbilical cord was wrapped around the baby's neck but it wasn't tight and there was no knot! The doctor arrived a few minutes later and delivered the placenta fifteen minutes later (it was only the size of an orange!).

David was put on an IV right away because of a low blood sugar count and he had petechei all over his body. He was 4 lbs 9 oz, 17 inches, and his apgar scores were 7 and 9. At no point during the pregnancy did anyone mention to me about anything being wrong with the baby, just that I was carrying small and they wanted to take precautionary measures...and I didn't put the dots together to investigate further. That evening before I went to sleep a doctor indicated they would be running some tests on him over the next few days, and took my blood to check for antibodies to something called cytomegalovirus. They said his head was small, yet in proportion to his body, and that he had a low platelet count. This was the first I had heard of this virus, and it meant nothing to me besides knowing something was wrong with my baby...I remember crying myself to sleep that night. Two days after his birth a head ultrasound showed a calcification deposit. I was released from the hospital but he had to stay in the NICU. He developed jaundice the next day and was put under those blue lights...he looked so tiny! The next day they gave him a blood platelet transfusion.

Seven days after his birth they ran an echo cardiogram to look for a heart murmur but instead it showed a slight narrowing of the left pulmonary artery. CMV was also confirmed on this day. The doctors (without our approval) prepped him for an IV in his head (because he had so many tubes everywhere else) for an experimental drug at that time called ganciclovir - when I went in that evening to nurse him I found out. My husband contacted the doctor immediately (I have never seen my husband as angry as he was that night) and the next morning they removed the IV; it was decided he wasn't sick enough to receive treatment. His CMV status was considered mild. This however freaked us out and we wanted him out of the hospital as soon as possible!

The next day a cat scan showed the calcification deposit in the brain indicated an infection took place in the womb, that encephalitis was present, and that the degree of brain damage was undeterminable. His hearing test indicated a pass in his right ear, but his left ear needed follow up. Spoke with the new NICU doctor in the hallway that evening. They were on rotating weekly schedules. I asked him why David was still in NICU and was told that besides for 'observation', he saw no reason, and permission was given for discharge the next day. David was 4 lbs 10 oz and 9 days old. It seemed as if a lifetime had passed in those nine days! They followed his platelet count and liver/spleen numbers as an outpatient instead.

At the time of his congenital CMV diagnosis, not much was told to me. I was given a lot of paperwork to read up on, but it seemed like every child responded differently and we were told we would have to wait and see how it affected him. I did understand how rare it was when the doctor indicated to us that their CMV child was born that year - indicating that the hospital got about one birth a year with this diagnosis.

The first two years of his life I was in a fog (but I kept good notes!). I realized this much later when I had my third child (in 8/99) and realized how much of my older daughter's life I missed out on when I started seeing my youngest do things that I had no memory of my oldest doing. I was deprived of sleep and had some anger/grief issues I was dealing with. Getting David involved with early intervention in the home and then enrolling him in a special needs preschool at age two and a half was just what he and I needed!

David had such trouble nursing, as well as sucking from a bottle, he took forever to feed, he developed his first of many ear infections at 3 months of age, and he cried with this high whiny pitch all the time! He very rarely, if ever, received any comfort from being held (and he was hard to hold because in some areas he was tight and in other areas he was very loose) and didn't much like to sleep! By the end of his first year his hands were in a clenched position and he had a crossed-eye effect (but with eye exercises his eyes now just tend to wander rather than cross).

When he was 2 he had bilateral adductor releases; at age 4 he had bilateral hip osteotomies and botox injections on the biceps; at age 5 he had a 5 channel pulmonary/sleep study to check on apnea and reflux; at age 6 he had a left orchiopexy, botox injections in his right calf and foot, a video fluoroscopy, bilateral bicep, finger and thumb flexor lengthenings; at age 7 he had achyllis and heel shortenings; at age 10 he had a g-tube placed. The g-tube was the best thing we did - rather than taking close to an hour to feed him each meal, it only takes a few minutes and he's so much healthier overall! And slowly but surely he's gaining weight (he was 33 lbs at the time of it being placed, and now, 2 years later, he's about 50 lbs).

He has a snoring issue (takes after his Dad!) but has never had any respiratory issues besides some sinus congestion due to weak throat muscles. He has developed seizures this past year that are at a treatable level and is on daily meds for this. And within the last year or two it has been confirmed he has a profound hearing loss in his left ear, and probably has had it since early infancy. Officially he is developmentally delayed with spastic quadriparesis and has cerebral palsy secondary to the CMV and in-utero encephalopathy with calcification.

David is a happy child and has always loved to laugh! His physical and motor skills are still at an infant level in many ways, but he is very cognizant of everything going on around him. He gets it. He gets the humor in things too and laughs quite contagiously. When school first introduced a computer to him they were amazed at his rate of progress - they gave him the award for the best eye gazer! He was and is able to communicate by eye gaze, body language, laughing/crying...and now uses a Dynavox computer that he accesses the switch with his head to communicate the details.

He doesn't walk, talk, roll over, or use his arms for much, but he does scrunch his body to move around. His neck muscles are extremely strong (you should see the positions he gets his head into sometimes!) and although he can't hold it up for lengthy periods, he does have some head control. He doesn't talk, but is vocal - and changes his vocal sounds when he's responding to our cats and their antics. It's sometimes frustrating to try to figure out what's wrong when he's upset, but for the most part he makes his need known in his own way.

His favorite song is the National Anthem! He loves to watch NASCAR (and gets so into it he raises his arms as if he's driving) and football. He's very much into Star Wars, and the Clone Wars series, Cops, as well as Barney and Blue's Clues! And is a big fan of slap stick humor.

David goes to a special needs school where he receives speech, physical and occupational therapy, and his best friend in his class is also a boy with congenital CMV. His mother and I are friends - when we met a few years ago and compared our stories, we were amazed at how similar the stories were. It really helped to meet another mother who went through the same if not similar struggles, and who yet faces the daily physical and mental challenges of having a child with special needs and wondering what the future will bring. We are blessed to have them in our lives. Everyday issues of daily life are taken for granted by the healthy - but for the child who cannot scratch an itch, rub his nose when it tickles, say 'I had a bad dream' when he wakes with a cry at night, life takes on different meaning for that child.

- Submitted by his mother, Mary