Pieces from The Mighty

Thursday, April 11, 2013

In Ellie's Honor

Every day thousands of babies are born too soon. When babies are born too early they are often very sick and some don't make it.

Last year I gave birth to two babies-one in February and one in October. Both Robby and Ellie were born prematurely at 23 and 26 weeks respectively. Unfortunately Robby did not survive. He lived for two hours before he died because his lungs were too immature and therefore he was unable to breathe.

After Robby was born I was told that I had gone into premature labor. My big question was "why?", but unfortunately nobody could give me the answer to that question, not even our Maternal Fetal Medicine specialist here in town. I was told to try to get pregnant again because “there was no reason why it should have happened."
Well, it happened again when Ellie was born at 26 weeks 3 days gestation.  Luckily, I made it far enough with Ellie, that she not only survived, but she is thriving.

Each year, the March of Dimes hosts the Walk for Babies in different cities around the United States.  The one here in Wichita was April 6, but because Ellie has chronic lung disease and the walk was scheduled at the tail end of RSV season, we decided it would be best for us to pass walking this year. I look forward to the day that our family can walk together in honor of Ellie, and in memory of Robby.

A fellow January mom, Amanda Pansey, is walking in honor of Ellie in her hometown. I met Amanda through an online support group for women who were due in January. She is a part of Ellie’s facebook group (Loving Ellie) and has been watching her grow. I feel so very blessed to have so many people like Amanda that have taken such an interest in Ellie and have been praying daily for her health! We are so very lucky to have people that were total strangers to us just months ago participate in events like this for Ellie! Thank you Amanda Pansey for walking for Ellie!

A donation to the March of Dimes goes to research that could help determine the causes of premature labor as well as things that doctor’s can do to prevent or stop preterm labor from happening and things that can be done after a baby is born prematurely to help improve their quality of life.

Right now there are several studies being funded by the March of Dimes that are near to my heart.

In a research study being help at Duke University, Richard Lambert Auten, MD is looking for ways to help prevent premature babies from having BPD, or as it is often referred to- Chronic Lung Disease.  They are looking for ways to better deliver nitric oxide to the lungs of babies who are likely to get Chronic Lung Disease. Chronic Lung Disease happens when a baby has to be on oxygen support for longer than 28 days of life. Since Ellie was on oxygen until she was 4 months old, she has chronic lung disease. What this means is that her lungs are weaker than the “normal” lungs, and because of this if she gets sick, she will get sicker than most babies, and have a harder time recovering.  Ellie’s Chronic Lung Disease is the reason why we have been in isolation this winter. So very few people have been able to meet our sweet little miracle, because this is RSV season, and if Ellie were to get RSV, it is likely  she would end up back in the hospital and possibly on a ventilator.

At the University of Nevada, Iain L. Buxton, is studying variant versions of a protein structure in uterine muscle cells to see if any of these variants are linked with preterm labor. These structures appear to help keep the uterus relaxed during pregnancy. If women who are at risk for premature labor can be identified early, then steps can be made to help prevent premature labor.

Stephen Lye, is holding a research study at the Mount Sinai Hospital, University of Toronto Canada, that is looking into how inflammatory proteins (cytokines) produced by the uterus can contribute to triggering preterm labor.  Cytokines are the first step in the onset of autoimmune diseases. With an autoimmune disease, the body attacks its own cells. Since this study is being done on cytokines and cytokines are the first step in the onset of autoimmune diseases, it is my hope that in some way this study will help link autoimmune diseases to premature labor. I truly believe that my autoimmune issues (fibromyalgia and rheumatoid arthritis) contributed to my premature labor.

All of the studies above are examples of why I support March of Dimes. They are funding research studies that could help prevent premature labor. Although I doubt we will have any concrete answers in time for me to carry anymore children, it is my hope that Ellie’s generation will benefit from this research that we are helping to fund by supporting people like Amanda Pansey and the walk for the March of Dimes.

Click here to donate to Amanda Pansey's Walk for Babies