My husband and I adopted Elisabeth from birth. We were there for doctor's appointments, ultrasounds, and the birth. We were blessed with Elisabeth on June 9. The birth mother was tested for CMV in her second trimester and was tested negative. Total time from arrival at the hospital to delivery was 80 minutes! The minute Elisbaeth was born her face was covered in reddish/purple spots. Her Doctor said due to her coming through the birth canal so quickly she had busted blood vessels and they would disappear. On the second day they were running normal blood work and discovered her bili-rubin was up. They placed in under the lights. After a few hours under the lights more blood work came back and led them to believe her liver was enlarged. So off, to St. Mary's Medical Center in West Palm Beach, Florida, we go!
They ran every test known to man and then made up some, I think! The discovered that from her blood and her birth-mother's blood somehow mixed during delivery and her liver had enlarged from trying to filter, not only her own blood but also, her birth-mother's blood which to her body was foreign. We was put on Phenobarbital for the liver. After 8 days the only other thing they discovered was her test for cCMV came back positive. We were told this on the day they released her. We asked what CMV was and what caused it. We were told its long name (Cytomegalovirus) and that it was caused by the birth mother handling animal litter. They told us that the old wives tale about not changing cat litter while pregnant is not a tale. It's a fact, and this is what happened with Elisabeth. We were told to not allow any pregnant women change Elisbaeth's diaper because she could pass the virus through urine for up to two years. We later read the hospital report and they stated that they told us on day two there that she was positive for cCMV. My sister who was 5 months pregnant was in NICU with us and held Elisbaeth and changed her diaper. Now don't you think if they knew on the second day there that they would have NOT let this happen! So just proves we weren't told until the day of release. And that is ALL we were told on this virus. We were never told ANY complications that could arise from it.
Elisabeth failed her hospital hearing test on the day of release. We were told that sometimes newborns do fail but later the test are fine. All her test until last year came back she's completely deaf. Somewhere between 7-9 months of age we noticed Elisabeth's body was "curving" when she was on the floor. Because of the failed hearing test she was involved with Children's Medical Services (Clinical Services) at a very early age of two months. So on one of her clinics to start her in Speech Therapy we laid her on the floor and they asked us if we had any other concerns and we pointed out the "curving". They said it seemed to be Torticollis. They said that it happens sometimes from the way the baby lays in utero and how the baby comes through the birth canal. Her Doctor gave her the same diagnosis. She was then signed up for Physical and Occupational therapy for that.
Her first pediatrician was through the Health Department simply for her first set of shots until we found a Pediatrician we liked. By the age of two months we had established with a permanent Pediatrician. She was generally very healthy. Never sick with colds or pneumonia or anything of that sort.
At approximately 18 months old we were in one of her Pediatrician appointments. Her Pediatrician was so curious as to the cause of Elisabeth's developmental delays. She hadn't been the one to see Elisabeth from the beginning so she didn't know the extent of everything. So she asked us to go back to the beginning and tell her everything. When we got to the part where they diagnosed her positive with cCMV her eyes literally lit up and it was like a light bulb had literally clicked on in her head! She has previously been an NICU nurse at a children's hospital so she knew all about cCMV. So from there she asked us questions like, so you know all the things that this can cause, and you know the precautions that could've been taken, etc, etc.--and we were just silent because we hadn't been told ANYTHING! We were so thankful that this was the Pediatrician we had!
By the time she was two we had noticed that she never, ever liked to lay on her left side. Her therapist eventually caught onto that, also. We started re-tracing everything and from birth, even in the hospital, we wouldn't lay on her left side. I was reading up on some thing and came across signs of possible hip dislocation. I called CMS and asked to be scheduled for Ortho Clinic.
When we saw the Orthopedic surgeon the clinic used, he saw her through tele-med. He never examined her and said "from her reports and xrays her hip is not completely dislocated but is definitely working it's way out but she's not walking so I wouldn't do anything."
After we left that clinic I was not satisfied. To me that was limiting her. She was two. He was assuming she would NEVER walk. Even if that were the case, how painful to sit all day on a dislocated hip!? So, I called back and asked to be scheduled for the next clinic and I wanted him to physically exam her this time. Clinic day came and we happened to be the last appointment on the schedule. The surgeon was running late first off and so that threw all the appointments behind. After waiting ALL DAY, the nurse came out and said we needed to reschedule because the Doctor was "tired and wanted to call it a day"! Honest to God!
So, can I just tell you that is when I decided I would never settle for what a Doctor said if it didn't set well with my spirit or my maternal instincts! I set out to find an Orthopedic Surgeon on my own. The clinic told me I had to use the one they used or I would be on my own as far as having the convenience of having a specialist come to our area vs me having to drive a good distance. I didn't care. I would have drove to the next state is needed for a good Doctor. I found one at Miami Children's Hospital. I simply wanted a second opinion before allowing my child to sit on a dislocated hip. When we got to the Miami Doctor they immediately did xrays and compared them from the ones I had which were taken about 4 months prior. Just from the first xray to the new ones her hip had moved more towards being dislocated. He brought another Doctor in from the floor and asked for his opinion, so this actually being a third opinion. Both the second and third opinions were that she needed to have the hip fixed. So at two and half years of age she had her first hip surgery. They put the hip back in and also did some muscle lengthening at the same time.
She recovered well. He did tell us that possibly every two years she would need this surgery until she was getting good weight bearing on the hip. She went almost three years before needing it again. So this time when they went in they did reconstruction on the hip and pelvic so that it would hold the hip joint in its socket. She recovered well from this surgery, also.
During all the hip surgeries Elisabeth had numerous ear infections. In one year, alone, she had 13!! So she went through two sets of tubes and also her adenoids at during the period of years through her hip surgeries.
During all these years she had periodic hearing test which all showed she was deaf in both ears. The last two years her therapists, doctors, family and friends have all said they have seen signs of hearing. She responds at times and she has said a few words ... words that she's heard us say! So last year when she lost her second set of tubes we took her in to her ENT and his Audiologist did a simple test and she looked at me and said, "I think she can hear!" So we're not thinking it's a tone/pitch issue. Although she wore hearing aides for almost two years with no benefit.
She came through her last hip surgery in Feb of this year and is doing remarkably well. We are in waiting for her new wheelchair and, also, for her gait trainer! She tries to get up, she tries to get off our laps, she tries to come out of her crib and her seat. Her upper body strength is not what it needs to be yet but that is being worked on. She is well on the road to many successes and goals.
We have been told many times that Elisabeth is not a "typical" CP or cCMV child. Yes, she has issues. Walking and talking being the biggest ones. But she's had pneumonia once in her life. She's never had the flu. She's never had a feeding tube. Although her diet is limited some, she eats well by mouth, and she doesn't have a shunt. We were told that there were no visible signs of cCMV at birth. The purple spots may or may not have been because there was another explanation for them.
We feel so blessed and fortunate, for her, that she is not worse than she is. That does not mean, by any stretch of the imagination that we are blessed or fortunate she is where she is. We strive and push daily to reach goals and accomplishments that we were told she wouldn't do. We don't force things she's not ready for but when the signs are there we don't give up. We were told last year that her nurses wanted us to start sending a sippy cup to school because they wanted to see if she was able to take one and try to be broke from the bottle. We didn't even know they were still using a bottle because had told them over a year prior to that, that she was on a sippy cup and they thought we were crazy. She eats things they say she can't, like peanut butter and jelly sandwiches. She loves them and will eat two of them in one sitting. They say the peanut butter is not good for her because her tongue muscles are not able to get it out if it gets stuck in her mouth. Well, I know that's possible so I only put enough spread very, very thin, for her to taste. She has NEVER had a problem with it. Now, I know she can't eat meat without it being diced into a salad form (chicken salad, ham salad, etc).
I know there are things she still has to learn to do and things she can learn with perseverance. I look at Elisabeth as a success cCMV story. My hearts goes out to all the cCMV children and their families. I can't imagine losing a child. I also don't know the difficulties in having tubes, and shunts, and other things Elisabeth has never dealt with. And sometimes I feel guilty telling people how well Elisabeth is coming along because I know there are so many more children out there that are not. And then there's times when I hear parents complain that they're child won't shut up or won't sit down or won't do this or won't do that and they are annoying their parents, and I just want to scream, "BE THANKFUL YOUR CHILD CAN!" And then there's the times when we're at a function or the park or church and Elisabeth is watching all the kids run and play and she's trying her hardest to get down and play with them and I just want to hold her and cry for her.
And I want everyone who was involved in NOT telling us about cCMV to see her NOT being able to be a part of what most children can be a part of. I want them to see the limited diets, and the AFOs that require certain shoes over them. I want them to see she can't wear sandals because her wheelchair feet straps leave marks and hurt her ankles. I want them to see that she can't get a bath and play with toys in the tub like most children can. She's 7 and still on the road to learning to walk and talk instead of learning how to play jax or put make-up on her Barbie dolls. She's learning how to recognize colors and words instead of learning how to write her name. Her school field trips include her being pushed in her wheelchair to the back yard of her school to get on the swing or play with the bubbles or have water day, instead of going to the zoo and running around looking at all the animals with the other kids. Her trips to the park with us include her being pushed around in her wheelchair and being held going down the slide, instead of her knowing the butterfly feeling in her stomach as she flies down the slide a little too fast, and feeling the breeze in her face, landing in a pile of sand feeling it between her toes and fingers, getting up laughing saying, "Mommy can I do it again?" I want them to see and feel everything that every cCMV child and parent goes through.
But I also want them to see that she IS learning her colors and words. I DO want them to see that she DID win a beauty pageant contest, even in her wheelchair! I DO want them to see that because of what they did NOT warn us about, and because of the trials and triumphs we've gone through we will NOT sit back and keep quiet about the cCMV!
- Shared by her mother, Tessa
Posted: 3/7/2017 2:47:10 PM