Chelsea with her brother Spencer

Our daughter, Chelsea, was born 2 years ago, after a fairly normal pregnancy. No problems were suspected even for the first few hours after birth, even though she was born in the front seat of my car on the way to the hospital! But that's a whole different story. The ob doctor on call kept telling me it was false labor because my due date was 3-1/2 weeks away. The neonatologist assures us that being born that way did not harm her in any way. Chelsea was born with brain damage and hearing loss due to congenital cmv (cytomegalovirus) they say I caught in the first trimester of my pregnancy, even though I had no symptoms and didn't know I had it. They first found small head circumference (microcephaly), purple specks on chest, enlarged liver and enlarged spleen, so they ordered other tests. Head ultrasound and ct scan found malformed brain with calcifications but no bleeding. They did a urine culture for cmv, which was positive. The doctor said at that time that her outcome could be mental and/or physical problems, hearing and/or vision problems, with mild to severe effects or anywhere in between. He said you just have to wait and see what develops.

At first, since there isn't much expected of a newborn, she didn't do too poorly on the developmental tests. She was eating and sleeping ok, and could be soothed easily when upset.

We had her hearing tested around 5 months old, which found moderate hearing loss in the right ear and normal hearing in the left ear. We then found out that her right ear had failed the newborn test at the hospital, but we were never informed! We had her hearing tested again at 8 months, which found the hearing in the right ear worse, now in the severe loss category, but still normal in the left ear. We just went back for follow-up testing last November. The right ear has gotten worse, but the left ear is still testing in the normal range. We have to continue monitoring her hearing because the cmv causes progressive hearing loss and the left ear could worsen at some point.

We had her eyes checked at 5 months, and the doctor said everything looked ok, that the reason she didn't track, etc. was because of developmental delays. We had her checked at 8 months by a different doctor. He checked her eyes in the office and said her eyes looked fine and it probably was developmental delays, but he would go look at her ct scan to check for cortical problems. He called me about a week later and told me that she would be considered legally blind because of cortical damage to the vision center of the brain and that she probably had 20/200 to 20/400 vision not correctable with eyeglasses. We had another vision check up this past November with the same results. She occasionally tracks briefly, but not consistently. I've met with an expert from the school for the blind, who says she may not have any central vision, only peripheral vision, which would explain her difficulty tracking.

Physically, she was diagnosed with mild hypertonia around 6 months old, later diagnosed with mild-moderate spastic quadriplegia. They never even told us this, they had put it in a letter to our pediatrician and didn't send us a copy until I requested one. I then asked the physical therapist what it meant, and she told me it was a form of cerebral palsy. I was shocked. We changed nuerologists. This new doctor puts her in the severe category. She seems strong and is growing well, but she doesn't roll over, sit alone, crawl or stand. Her head usually sags to the right and her eyes usually look to the right. She moves her arms to bat at toys and she kicks her legs like crazy to kick noisy toys or splash in the swimming pool. She goes for OT, ST, PT and home instruction two times each per week. Is it helping? I can't see much progress. None of the doctors, etc. have suggested any other medicine, surgery, etc. to help her physically, so I wonder if I am missing something. We just got her a KidKart stroller (looks a lot like a wheelchair) recently, because she is outgrowing the infant carrier/stroller we've been using. It hasn't left the house! It will take a lot of getting used to, that's for sure. Besides the KidKart and a plywood corner chair we made, we have a few other pieces of specialized equipment for Chelsea. We have a BiForm Wedge to use for exercising, a feeder seat for positioning/seating at daycare and some switched toys with switches for play/education. We've also made some pvc toy racks and a foam chair for her.

Mentally, her capabilities are very hard to guess because of the vision, hearing and physical problems. She is definitely delayed, I guess you would say severely, but no one has ever rated her at a certain age level. I would guess 4-6 months. She doesn't respond normally for sure, but she does give some response. She especially responds (smiling, squealing, giggling and laughing) when our 4 yr. old son fools with her, or when my husband "roughs her up", or when my dad whistles to her. I can't seem to get as much of a response from her, I guess I'm the food supply, etc. Really similar to the way my son was as an infant, the mom gives care, the dad is for play.

We have tried different medications to get her seizures under control. These started very gradually at 10 months. We have tried Phenobarbitol at four different levels, then Acthar injections, then a higher level of Pheno, then Lamictal, then Klonopin. At first the neurologist said they were infantile spasms, but when the EEG was repeated after the Acthar, now she says they are myoclonic, generalized tonic seizures and focal seizures. The doctor had said she planned to try Depakote next, then Tegratol. She is still having 30-50 jerks per day, but they only last 1-8 seconds each. The seizures don't really seem to bother her much, but at one point she was having about 100 per day, and it is really hard to watch her like that. Right now, we are just living with the seizures, waiting to start the next round of trial medications.

Chelsea has a lot of problems, but she is like a happy 5-6 month old newborn (except heavier to carry!). She still sleeps good, thankfully. She eats pretty good, but she throws up a lot, especially if she is congested. She takes formula and juice from a bottle and eats a little baby food. If you try to give her something thicker/lumpier, she coughs and gags until she gets it out of her mouth, usually comes out plus some! The doctor says that she still hasn't lost that newborn protective reflex. I hope she doesn't end up needing a tube, but who knows. Sometimes I wonder about the many, many doctors, therapists, specialists, etc. we are seeing. Not a single one of them has ever suggested a medicine, therapy, surgery, etc. to help her to eat easier and hold her food down. Since she is gaining weight ok, the dr. thinks we shouldn't do anything now and that she will outgow this problem.

We really don't know what to expect in the future. My number one fear is for her hearing because you get the best response from her with auditory stimulation and that congenital cmv causes progressive hearing loss. My next greatest fear is what happens to her when we are gone. My husband and I are each 37. I hate to leave our son with the responsibility of taking care of her, when he will probably have his own wife and kids to provide for. We finally decided to have another child, but are scared to death of more problems. With my age, I especially worry about Downs Syndrome or other chromosomal problems. Like the neonatalogist told me, there are some chromosomal problems that would make Downs Syndrome look like a blessing. We had a tough time deciding, but I felt like time is running out because of my age. Besides that, my husband had to have his vasectomy reversed! We panicked after Chelsea was diagnosed, and had it done when she was 8 months old. Well, I am pregnant now with another baby due August 2nd.

We live near Baton Rouge, Louisiana. There aren't any children's hospitals or any great, famous specialists here that I know of. I have trusted the doctors we've been using, but after reading so much on AOL, I am starting to seriously doubt that we are getting the best care for Chelsea. I really don't know where else to go though. Are there any really great specialists anywhere that know how to deal with the combination of physical/mental/hearing/visual/seizure problems Chelsea has?

Someone may think I expect too much because she is only 2 years old, but since I haven't seen much improvement in the last 18 months, I feel like we've wasted time and need to do something else. Has anyone had any experience with aquatherapy or therapy using pet dogs or music therapy? How do you deal with a child with this combination of problems? How do you keep your faith in God, when faced with this heartbreak and suffering? How do you handle the pain your baby goes through at blood test after blood test after blood test? How do you know your doctor is doing everything possible for your child? Where have you found that takes the time to get a good family portrait? How do you handle vacations? How do you find the time to do home therapy? I could go on and on and on.

Another problem we are facing is the financial end of this. My husband works full time and I work part-time, but my hours are very limited now. They say we make too much money to qualify for WIC, SSI, Medicaid, Medical card, Handicap Children's Clinic, etc., but they don't take into account the previous obligations you had before your child was born, like the house note, etc. The state programs that are not based on income have very long waiting lists or are "out of funds at this time". The Part H Grant has helped some with therapy and the KidKart, but that ends when she turns three. We live in a rural parish adjacent to Baton Rouge, so we don't qualify for some of their special programs.

I know this is very long, and I hope I haven't bummed you out too bad. People tell me at some point, you accept this and move forward, but I guess we are just not "there" yet.

You can e-mail me back at: TinaK1997@aol.com or TinaK1997@LaWired.com.