Bloomington, Indiana — April 6, 2015 — April is national Donate Life Month. Rest assured that Crosby Hoots’ parents (and likely the entire town of Mt. Zion, Illinois) will be promoting organ donor awareness throughout this month as a way to thank the family who donated their child’s liver — a selfless act that saved Crosby’s life.
Crosby began his life on April 20, 2012, when Philip and Gina Hoots traveled to Indianapolis for their second attempt at in vitro fertilization. They were hoping for success this time around and 14 days later, Gina got the call with the news they had been waiting for … she was pregnant. Crosby Steele Hoots arrived right on schedule on January 7, 2013, weighing 7 pounds 12 ounces.
Gina and Phillip were ecstatic. However, on January 9th their joy turned to anxiety when one of the routine newborn screening lab results showed an elevation in Crosby’s direct bilirubin levels. He was air-lifted to the neonatal intensive care unit in a nearby city where he was kept for seven long days of grueling medical tests. Finally, Gina and Phillip heard the news they had come to fear — the specialists suspected biliary atresia. The diagnosis was confirmed in mid-March and Crosby underwent a surgery called the Kasai procedure, which is an operation to create an open duct so bile can drain from the liver. The Kasai procedure is not a cure for biliary atresia, but it does allow babies to grow and have fairly good health for several years.
Unfortunately, Crosby’s Kasai was unsuccessful, and Gina and Phillip were told a liver transplant would be his only chance of survival.
Gina blogged, “I never thought Crosby would be facing a life-threatening diagnosis. All medical problems can be fixed, right? We are so lucky to be living in today’s world. Sigh of relief, right? Not so fast. Ten percent of babies die from biliary atresia. My baby has a real risk of death.”
In early June, Gina blogged, “I think I’ve been living in denial the last couple of months. Sure we still keep our doctors’ appointments. Yes, we are still giving Crosby mega doses of vitamins and antibiotics every day. And yes, we keep mixing high calorie formula to ensure Crosby gets every bit of nutrition he can. I keep writing this blog and updating everyone on the latest. He’s so happy and looks so healthy to me. We still can’t SEE his illness. We can see the jaundice and floppy muscles and teeny tiny body, but we think he is pretty perfect the way he is.”
By the end of June, Crosby’s team of specialists told Gina and Phillip it was time for his transplant evaluation at St. Louis Children’s Hospital. Gina had heard about the Children’s Organ Transplant Association (COTA) from other liver transplant parents she had encountered, and she decided it was time to reach out and do some research. She and Phillip knew the financial impact of the transplant was going to be huge. The Hoots family had great medical insurance, but they soon discovered there were so many out-of-pocket expenses, including co-pays, prescriptions, loss of income and travel/lodging.
COTA uniquely understands that parents who have a child or young adult facing a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of volunteers. A COTA fundraising specialist travelled to the Hoots’ hometown in mid-July and by August, their COTA team of volunteers already had organized a huge COTA fundraiser in honor of Crosby.
The COTA in honor of Crosby H volunteer team worked tirelessly to tell his story using area media and various social media platforms. This resulted in numerous individuals who wanted to give Crosby the gift of life by donating a portion of their liver.
By the end of summer Gina blogged, “So we wait. And wait. And enjoy our time with him. Keep the bag packed in case we get the call. Not really expecting the phone to ring. Stay busy with all of the details of daily life. Now that he has been on the list for some time, we are ready to move forward. We are ready for the call. We are ready for Crosby to begin the next chapter of his very bright and promising life.”
During the fall months, Crosby continued to hold his own. The feeding tube began to deliver his nutrition during the nighttime hours and Crosby started sleeping through the night. The best news? Crosby started to grow, which caused great improvements in his muscle tone and his coordination. In fact, Crosby was healthy enough that his liver team allowed him to travel to Florida over the Christmas holiday to visit his grandparents.
January 7, 2014, was Crosby’s first birthday, but because of huge snow storms and Crosby’s struggles with Respiratory Syncytial Virus (RSV), his party had to be postponed indefinitely. Instead of being at home celebrating his birthday, Crosby was rushed via ambulance to St. Louis. And then it happened on January 31st. Gina and Phillip got the call that a liver was available.
Gina blogged, “We drove home, filled up the gas tank, dropped the dog off at the vet and headed towards St. Louis. The team was waiting for us when we arrived (3 hours and 45 minutes later) and the process began. Labs, Chest X-ray, EKG all done. We had consults with the surgeon and anesthesiologist. We had a few vague updates on the donor. When all was said and done it was decided the donor was going into surgery at 0500 and Crosby would be headed to surgery around 0700.”
“Two sets of Grandparents arrived. The third set was there via Skype. The night was uneventful; I’m glad we had that time to prepare. I made sure all the household bills were paid up for the next few weeks so I wouldn’t have to worry about missing a payment. COTA was contacted. Everyone was ready to move forward. A few work obligations were finished up and it was time to get a little rest before the morning arrived.”
“At 6:45 am we went down to pre-op holding to get ready for surgery. Anesthesia met us and did a quick assessment. While they were in the room, they got paged away. When they returned, they gave us the bad news — the liver wasn’t the perfect one for Crosby. The original intention was to split the liver into two pieces with the large lobe going to an adult patient and the smaller lobe going to Crosby. Something about the liver didn’t allow it to be split in a way that would work for Crosby. The happy news from all of that is that the donor was able to give his liver, lungs, kidneys, and heart to deserving patients.”
Crosby, Gina and Phillip returned to Mt. Zion to, once again, wait.
On June 13, 2014, the wait was finally over when Gina and Phillip were told a perfect liver was available. They packed up, once again, for an extended stay and travelled to St. Louis. Crosby received his new liver, and his second chance at life, on June 14th. The COTA for Crosby H Facebook effort posted the opportunity for their supporters to purchase a t-shirt to raise funds for transplant-related expenses. The t-shirt read: “Of course I’m an Organ Donor … Who wouldn’t want a piece of this?” According to Gina, one very important thing that happened while the family waited for Crosby to receive his new liver was the COTA in honor of Crosby H team of volunteers continued planning and holding fundraisers for transplant-related expenses.
“COTA continues to give us hope by allowing us to focus on Crosby’s health and well-being. We have learned that along with the scare of having an ill child, the financial burden is immense. We also struggled with the extended, unpaid leaves from our jobs. COTA has alleviated a huge part of our stress by eliminating the worry about finances, which has given us hope that our family can survive this transplant journey without losing everything,” said Gina and Phillip.
One day after Crosby’s life-saving transplant, Gina blogged, “We are completely overwhelmed by the outpouring of prayers, support and messages when Crosby received his second chance at life. It will never be forgotten and we will continue to pay it forward in the years to come.”
Nationwide, April is the month that is dedicated to raising awareness about the need for registered organ donors. Many COTA families are waiting to receive that life-saving call the Hoots family received less than a year ago. For more information about how you can become a registered organ donor, go to http://www.donatelife.com/Donatelife/Register.html.
For more information about the Children’s Organ Transplant Association, or to find a COTA family in your area, please email gro.a1500856541toc@m1500856541ik1500856541.