Mason’s journey begins on September 5, 2008. We were not anticipating Mason’s arrival until closer to Thanksgiving, however, Mother Nature had other plans for our family. I started to retain fluid throughout my whole body at my 28th week and was taken to the hospital. I was diagnosed with sudden and severe preeclampsia, or pregnancy induced high blood pressure, and my kidneys were starting to shut down as a result. I needed to be flown to the University of Maryland Medical Center in Baltimore, Maryland for evaluation and treatment, over an hour away from our home in Spring Grove, PA. The news there was not good. The only cure for my condition was to deliver the baby, because until then both of our lives were at risk.  The doctors did their best to prolong delivery to give the baby more time to develop. After several days of bed rest and high doses of blood pressure medication, the decision had been made. It was time for Mason to enter the world, 11 weeks too soon.

On Friday, September 5, 2008 at 3:07pm, Mason William Thibault entered the world weighing 2lbs. 9ozs. Due to his underdeveloped nervous system, Mason required some assistance with his breathing. They had to put a tube down his throat to feed him because premature infants do not yet have to ability to suck from a bottle, swallow, and breathe all at the same time. We traveled more than two hours a day, every day, to and from the hospital in Baltimore to be with Mason.

On September 25 our lives forever changed as our tiny little boy was rushed to emergency surgery due to a drastic and sudden decline in his medical status. The doctors suspected a bad infection and exploratory surgery was the only option. Mason was diagnosed with Necrotizing Enterocolitis, or NEC. NEC is an infection and inflammation of the intestines that ultimately causes destruction of the tissue, and it effects 1 in 10 premature infants. The disease had destroyed part of Mason’s small bowel, part of his colon and his appendix. Just 24 hours later the disease returned with a vengeance, taking with it most of his remaining small bowel. Mason was left with only 10-15% of his small bowel, not nearly enough to survive. The only option was to use nutrients in the form of IV medication to meet Mason’s nutritional needs. This concoction called TPN did not come without risk. TPN has been shown to cause liver damage and in some cases, liver failure. Every patient is different. The TPN is delivered through a flexible catheter called a "central line" that is surgically placed into the chest, neck or groin. It is intended for long-term use and it too comes with risks. There is a high risk of infection involved with a central line, which can sometimes lead to the need for surgical removal and replacement of the line. Learning to use and maintain Mason’s central line now became a requirement for us to be able to take him home. We were like sponges absorbing any possible medical knowledge about Mason's condition as well as how to maintain and operate all of his equipment and tubing. We refused to be the only thing standing between Mason and discharge.

We desperately wanted Mason home for Christmas, and we almost got our wish. On December 16, 2008 we got to take our angel home to Spring Grove, only to return Christmas Eve due to an infection of his central line. Christmas would have to wait.  Following a week long stay at the hospital we returned home to finally celebrate Mason's first Christmas. Aside from an occasional infection requiring hospitalization and IV antibiotics, we have been able to maintain Mason’s medical needs from home. This requires weekly blood draws from an IV nurse to monitor nutritional needs and effects of the TPN, weekly delivery of his IV fluids and supplies, and we mustn't forget lots of love and patience. I have not been able to return to work since Mason's birth due to his medical needs.

Several times during Mason's stay in the NICU, transplantation of the small bowel was mentioned as a last resort for long-term support of Mason’s nutritional needs as well as his life. There was also the possibility of his liver requiring transplantation down the road due to damage caused by the TPN. We researched the two closest pediatric intestinal transplant centers and made the decision to contact Children's Hospital of Pittsburgh for recommendations regarding Mason's care and eventually for a transplant evaluation. In April 2009, we had Mason admitted to CHP for a week long transplant evaluation where doctors made the decision to consider Mason for transplantation of the small bowel. The necessity for transplantation of his liver will be re-evaluated as needed, but has not been recommended at this time. After a 2 month dispute with the insurance company, Mason was finally listed for small bowel transplant in June 2009.

As we prepare for the phone call that will yet again change our lives forever, there are several obstacles we will have no choice but to face. When Mason is transplanted, there is a very real possibility that our family of 3 will be separated during the week while my husband works 4 hours away from Pittsburgh. I will be relocating to The Steel City with Mason while he recovers from his transplant, which we are told could be anywhere from 6 months to a year. We must also struggle with the financial strain of a single income family and the transplant related expenses not covered by insurance. To help us with the financial strain, we have turned to COTA for guidance and support. COTA is a national charity dedicated to organizing and guiding communities in raising funds for transplant-needy patients. An estimated $60,000 is being raised by Spring Grove volunteers as well as volunteers from surrounding areas.

Information on how you can help is listed on this website, or you may contact Cindy Lowery, Community Coordinator at 717-637-0475 or craftichic@yahoo.com for details about current needs for the campaign or suggestions for fundraising events.  All areas of the website will be updated with new information on a regular basis. You can sign up to automatically receive an email whenever the site is updated by creating a username and password. This feature will also allow you to leave messages and words of encouragement for our family in the site's guestbook.  Please share Mason's story with everyone you know and ask them to do the same! Thank you for joining us and supporting us in our transplant journey, we look forward to sharing it with you!