Madelyn Kate Mackens

Dear family and friends,

The plan is to use this blog to update you daily on what is going on with Madelyn ("Maddie Kate"). Madelyn Kate Mackens was born on September 2nd at 4:55 am at 38 weeks and 1 day of gestation. She weighed 6 pounds and 14 ounces and was 19 inches long. Labor went well with Jess only in active labor for a few hours and pushed for just over 5 minutes.

Madelyn was born looking quite healthy with APGARS of 8 and 9 at 1 minute and 5 minutes. I apologize if some of this info is jargon to you but bear with me. She was able to breast feed pretty early and did well with it. We did notice that she had some petechiae (small hemorrhages) on her face and upper chest that we believe were from normal birth trauma. She also became jaundiced very early (in the first 12 hours of life) which is not normal. The nurse in the nursery took Madelyn back for a routine hearing test (which she failed) and while there did a bilirubin check through her skin which was well above normal. Next a blood level was drawn which also was very elevated.

The docs decided to transfer Maddie Kate to the Neonatal ICU at Jackson General to watch her closer. There were plans to fully exchange all of her blood because her bilirubin was high enough to cause concern for permanent damage if it continued to rise. Just before she was to be transfused another bilirubin level came back which was a little bit lower than the first. This was most likely due to light therapy but nonetheless promising. Thus, the exchange transfusion was held to see if the lights continued to help.

Shortly after her bilirubin returned we found out that her liver enzymes were also quite elevated and her platelets were in the moderate low range. At this point we also saw that her direct bilirubin (there are 2 types) was elevated which was definitely abnormal. The other type of bilirubin is what usually rises in neonates due to breastfeeding or other issues. Direct bilirubin can rise for several reasons including infection and liver dysfunction. The NICU doc decided to run a series of tests to try and figure out what the issue was. They also performed an ultrasound which showed an enlarged liver and spleen, but no other issues in the body or head. Before all the tests could result he decided we should be transferred to Vanderbilt for better care since they had all of the other pediatric specialties.

We arrived at Vanderbilt after lunch on 9/3/11. The NICU docs immediately ordered many more tests and repeat tests. The NICU doc in Jackson (who works at Vanderbilt primarily) had the thought that Maddie had an infection with a virus called CMV. The day after we arrived to Vanderbilt the lab in Jackson called me (Austin) on my cell to inform me that the test was in fact positive for CMV (cytomegalovirus). In between arriving at Vanderbilt and the confirmatory test for CMV, a repeat ultrasound was performed which showed no structural abnormalities in the liver but also showed a very small calcification in the brain which is consistent with the CMV virus. If you read up on CMV, the virus is quite common, but is rarely ever severe in healthy adults. It is usually only a problem in immune-comprimised adults and newborns. CMV has some nasty effects on newborns including neurological issues such as developmental delay and hearing loss.

Infectious disease (ID) was consulted to see Maddie after her positive test resulted. ID recommended getting a lumbar puncture (LP), CT scan of the head and a MRI of the head as well. A lot of these tests are to determine the severity of the virus as well as to rule out any other possible things that could be coinciding with the virus. The tests also help to determine the necessity of treating Madelyn with an antiviral for CMV which is called ganciclovir. Ganciclovir has some nasty side effects including suppression of the bone marrow and suppression (i.e. the white blood cells). It also has not been widely tested. Therefore ID was consulted by NICU to make sure it was absolutely necessary to treat Madelyn with the antivirus before just blindly giving it to her.

Before the LP could be done we found that her platelets had dropped lower into the severe low range so she had to be given a transfusion of platelets on 9/5/11. After her platelets have been transfused they will recheck her level and see if it is safe to continue with the LP. After that they plan to get her MRI to better assess if the virus has caused any damage. While all of these tests are in the process of resulting, the ID doctor determined that we should go ahead and begin treatment with the antiviral. If we find out that her bone marrow or white count is suppressing, they can stop treatment long enough for the levels to come back up. Also, if they find later on the treatment would not be necessary, they can stop treatment at that time.

Some good news: Madelyn is feeding well and is acting like a normal newborn. She does not look unhealthy although she is. We found out this morning that her CT scan came back and did not show any calcifications in the brain (which would show signs of damage from the CMV). Her direct bilirubin and liver enzymes were also down.

Some news that is not so good: Her platelets were down, thus the reason for the transfusion. Also the CT showed possible signs of a bleed in her brain. It is still undetermined whether the blood is from birth trauma or due to low platelets or another etiology. There was also an area of concern in her brain that could be a sign of ischemia (low blood flow). Both issues will be better visualized with an MRI once obtained.

Results yet to come: We are still waiting for results from the LP if it can be performed and images from the MRI. We have yet to start ganciclovir, but this should happen by early tomorrow. They will continue to monitor her white blood cells and platelets during this process and adjust medicines or transfuse platelets again if necessary.

More info to come......