Explaining the loss of your child or children never gets easier. In 2007 my husband, Travis, and I lost our infant Charlotte Diane to a very rare viral infection of the heart.. Then in 2012 we also lost our two-year-old Stella Rose to another rare disease, brain cancer. Tragic as these losses are, this story is not about our losses, but what we gained by being at Arkansas Children's Hospital.
When Stella was diagnosed, I quickly contacted as many people as possible to research where she should be for the best care and the best chance for her survival. I spoke to doctors, family and other hospitals only to discover she was in one of only eight places in this country capable of treating her illness.
I was prepared to travel to the farthest point of the world if it meant giving her a better chance to live, but having her so close to our family, friends and most importantly, our son, changed our path for the better. Travis and I were able to work 2-day shifts, trading time home and hospital for six months. This allowed us to keep things as normal as we could for our 7-year-old Davis. Family and friends were able to visit us and fill in gaps for the times we both had to be at the hospital.
The care received at ACH for us as parents cannot be matched. These were the hardest and most desperate months of my life. ACH made them easier with child-care therapist, Amanda, and our own therapist, Carrie. While we did not spend time sitting in a chair talking about our feelings, we were visited often by them. My son told me, "Mom, if I need to talk about things, I can come to the hospital to talk to Amanda."
Additionally, the nurses and staff, were the most caring and loving group of people I have encountered to date. I remember Stella telling our nurse, Theresa, "I love you." She then reached for her to plant a kiss on her face. Theresa attempted to give a germ-free cheek, but Stella would have none of that and turned her face and laid a smacked her right on the lips.
This is just one of so many moments that I will never forget. They were not all good moments, but they were moments I would not have had without our surgeons, oncologists, nurses, staff and others making sure we gave her the best possible chance. ACH did their best to ensure Stella's health was priority and her parents' health was next in line.
Our stays at ACH do not have happy endings, but provided us with some happy memories and hope. I share this side of our story for a reason. I want Arkansas Children's Hospital to continue to thrive and advance so children can continue to be treated with such a high quality of care close to their homes and communities. Our family will continue to put ACH at the top of our priority list just as they did our daughters and ask that you do the same.
When I become pregnant in 2013, I just had a feeling it was twins. When that feeling was confirmed I was over the moon. I was having identical twins, something I had dreamed about since being a child. I quickly began doing some research and learned just how high risk this type of pregnancy was. I began hearing things like Twin to Twin Transfusion Syndrome and read about a rare but potentially fatal complication that can occur, Twin Anemia Polycythemia Sequence, TAPS for short. I was quickly transferred to the care of a high risk specialist. My pregnancy was not uneventful like I hoped. I had multiple complications and was put on bedrest at 27 weeks due to preterm labor.
Despite these complications, our girls stayed put till 37 weeks. My labor and delivery was uncomplicated. But as soon as I saw my girls, I knew something was wrong. One was extremely pale and the other almost purple. I had done enough research to know my babies had undetected TAPS. They had defied the odds and were lucky they survived the pregnancy. But they had the fight of their life in front of them. My anemic baby, Alexis, began healing very quickly. Isabella, my polycythemic baby did not do well. She rapidly began losing weight and sleeping all the time. You see, her blood was so full of platelets it was like ketchup and this is very hard on a heart. We were discharged from the hospital at 4 days old. At home Isabella continued to deteriorate. I'll never forget the call from the pediatrician telling me it was time to take her to Arkansas Children's Hospital. He said he knew they could save her life. That drive to Children's was one of the longest I've ever had. I cried the whole way.
Once at Children's, we were immediately admitted to the NICU and introduced to the neo-natologist. She was so kind and explained everything they would be doing. Isabella was there for 5 days, the longest 5 days of my life. To see your baby hooked up to tubes, unable to eat, hear her cry from hunger was unbearable. To make it even harder I had a newborn at home and 2 older kids. But the love and care we received at Children's made this bearable. They have a family centered approach and they truly cared about how this was affecting everyone in my family. I can remember them telling me to remember to eat. Even the ladies in the cafeteria would tell me to go get more food. The nurses were so caring and precious to me.
To this day, I look at my girls and know they are miracles. And I have no doubt in my mind without Arkansas Children's Hospital, Isabella would have died at home. She quit breathing an hour after being admitted, we could not have saved her at home. I Thank God Children's is so close to home. I am forever grateful to Children's for saving my miracle babies life!
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