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Leah’s Story
Where do I start? My pregnancy started out normal and uneventful, everything seemed to be perfect...I then got the phone call that would change the rest of my life!
A few days earlier I had a quad screen done. I didn't think much of it. They were calling me to tell me that I had a possible Down Syndrome baby. They scheduled me for an ultrasound, at 18 weeks where we found out that we had another little girl on the way. We also found out that she had Eccogenic Bowel and Intrauterine Growth Restriction. They put me on bed rest and had at least 1, sometimes 2 ultrasounds a week. After that it was a pretty uneventful pregnancy other then the tons of Dr appointments.
I was induced at 36 weeks. And Leah Jade was born 1/15/08 weighting 5lbs 15oz. She was beautiful! We soon found out that she did not have Down Syndrome, but she did have Petechi all over her body. They took her to the nursery where they did some blood work where they found out that her platelets where low. Extremely low at 17,000 (normal range starts in the 200,000).
Within 2 hours of being born, they where transferring her to another hospital with a level 2 NICU, 20 minutes away. I was discharged and went to that hospital also. When we got there we were told that they were running a lot of different tests and that some took a few days to come back. We were told to just wait and see.
Leah received 4 platelet transfusions while in the level 2 NICU, but she just wasn't getting any better. So they decided to transfer her to another hospital. While being transferred to this hospital we found out that she was CMV positive. What did that mean? What was CMV? We had never heard of it.
They continued to give her 4 more platelet transfusion. We saw many different specialists. They just continued to tell us that they didn't know what would happen with Leah. We then spoke to a wonderful man who finally knew something about CMV. He told us what CMV was, what it could mean for Leah, and what options we had. He told us that Leah had an enlarged liver and spleen. He said that this is most likely where all of her platelets were going, her body was eating her platelets alive. He then told us about this Chemo therapy medication that they can give that can stop any further damage being done, especially hearing loss and blindness- it was called Gancyclovir.
After considering it, looking at all the positives and negatives we decided that we need to try it. Our hope was for the virus to go dormant within her system and give her body enough time to build its own immune system so that she can fight the virus herself without any further damage being done.They had to place a PICC in her to receive this medication. That night the PICC was placed in her scalp. They started her medication and within 2 doses, her platelets began to stabilize, her liver and spleen were already receding in size and she seemed to be taking the medication very well.
The next day, we had an ultrasound done on her brain where they found spots of Calcification. She then went in for an MRI where they found enlarged ventricles, 4 spots of calcification, and white matter. We also learned that Leah's brain was smooth, a normal brain has bumps and ridges in them, Leah's does not.
Leah also received a hearing test that she failed in the hospital and an evaluation from the Physical Therapist. PT had very little concerns at this time, but referred us to come back in 2 months.
Leah was in the hospital a total of 17 days. Around 13 days old, I asked if I could take her home on medication. And the hospital agreed if I was willing to get Chemo certified and learned how to give her medication to her. Four days later she came home.
We had doctor's appointments everyday. It was very hard but not as hard as having her in the hospital.
Leah was first treated with Gancyclovir for 7 1/2 weeks. She had treatment 2 times a day over 1 1/2 hours. The virus was dying. When she was born, her virus load was at 65,000. 3 weeks later it was 140. After she was taken off Gancyclovir we knew it was always a possibility that the virus could reactive within her system and we would have to begin treatment again. And that is excatly what happened.
Four weeks off of Gancyclovir all of her symptoms that she had at birth were back. Her virus load this time was 1.5 million. She was a very sick little girl. We wondered if we had done the right thing by treating her? Now the virus was back and doing excatly what we had been trying to stop it from doing...
We placed another PICC and began treatment again with Gancyclovir. 3 weeks later the virus load was at 540. We had a sigh of relief. We had done what we best for Leah and our Family After another 3 more weeks of treatment we switched from IV therapy to an oral medication called Valgancyclovir. Leah had a total of 11 months worth of treatments. I finally learned which appointments were important and which ones were not. At 2 months, we went in for a hearing test. We then learned that she had moderate to severe loss in her right ear and severe to profound loss in her left. Leah tolerates her hearing aids well when she is in the mood for them. Leah at 3 1/2 signs what is relevant to her but understands more then she can sign. Leahs sight is great for a CMV child. She is far sided but that is not related to the CMV.
At 2 Months old Leah was diagnosed with Cerebral Palsy. She has a very mild case, but she has some stiffness in her legs.
I thank God everyday for introducing us to the amazing Dr. that treated Leah with the Gancyclovir. When Leah was born we were not giving a good outcome for her... I remember the word "Vegetable" being used by the neurologist.
Leah is anything but that. Leah is now 3 1/2 and is doing AMAZING!!! She is crawling and walking along furniture and gets closer to walking independently everyday. She does have some sensory issues with her mouth which involves her only eating from a bottle. She takes a variety if food as long as she can have it in her bottle. She can say 15+ word and 15+ signs. She loves playing with her sister, playing the clapping game, her Daddy and anything Lady bugs! Leah is a happy little girl and loves life even though life isn't always fair.
Leah is progressing very well and is amazing us everyday. She is a blessing and has taught us more in her 3 1/2 years then I could have ever expected. Leah has taught me what true unconditional love is!
She is our miracle and we love her dearly.
- Shared by her mother, Lacey