Wyatt's Fight with CDH

Wyatt, his mother Sarah, and his father Jeff have had a long journey full of different milestones. Here is Wyatt's story.

After a routine ultrasound in January 2018, Jeff and Sarah learned that their baby was diagnosed with a rare, life-threatening medical condition known as Congenital Diaphragmatic Hernia (CDH). This occurs when a hole in the diaphragm (the muscle under the lungs that is responsible for breathing) does not develop correctly and allows the organs from the abdomen to move into the chest cavity during the first Trimester. CDH affects about one in every 2,500 babies per year. This condition prevents proper lung development, function, and complications of other major organs. This condition prevents the normal development and growth of the lungs which means: when a child's lungs do not fully develop he or she will not be able to breath on his or her own after they're born. The national survival rate for this condition is only 48%.

Wyatt's  CDH was diagnosed as very severe as his liver, stomach, and intestines have all ascended into his chest cavity and his lung volume was at  25%. On June 2nd, Sarah was admitted into Strong Memorial Hospital in Rochester were they would stay until Wyatt's birth. They were blessed with an amazing team of doctors who would stay with them throughout this journey. Wyatt came into this world ready to fight on June 4, 2018 weighing 6 lbs 11 ounces. He was whisked away by the NICU team and Jeff and Sarah had to wait 6 hours to first meet their baby boy. Wyatt was missing the entire left half of his diaphragm and because of this, his stomach, intestines and part of his liver entered into his chest cavity. This pushed his heart to the right side but more importantly, caused his lungs to not grow.  From here their long fight began. 

In Wyatt's first 4 months, he has overcome many miraculous obstacles. One day after birth, he was placed on ECMO. This was our first step to helping Wyatt fight. Some babies are good candidates for placement on a modified heart/lung bypass machine called ECMO (extracorporeal membrane oxygenation). The medical team and family together discuss whether this machine will improve Wyatt's outcome. ECMO gives the lungs more time to recover and function normally. Babies who require ECMO due to the severity of CDH have a 50-percent survival rate. Wyatt spent 16 days on ECMO and had his CDH repair surgery on June 22, 2018. After his surgery, Wyatt fought hard for two weeks but started taking a turn for the worse and needed to be placed on ECMO a second time. On July 5, 2018 he was placed back on ECMO where he stayed on for 21 days. Typically, you can only go on ECMO once and after his repair surgery because of the ventilation that Wyatt required his cannulas that he had in on his first round of ECMO had to be removed. This was a risky procedure and a procedure that has never been done at this hospital with a NICU baby. To me the choice was simple. Wyatt was given this chance and I certainly was not ready to say goodbye to my baby. On July 25, 2018 Wyatt was removed from ECMO and was fighting this battle without any support from ECMO.  On August 22, 2018, Wyatt had his stomach surgery where his bowels were pushed back into his abdomen. In a couple weeks, Wyatt will undergo a surgical procedure for a tracheotomy. An incision will be made in his neck into the trachea (windpipe) and the resulting stoma (hole), or tracheotomy, will be used as the site for his tracheotomy tube to be inserted.  The tube will allow him to breathe without the use of his nose or mouth. Having a trach will allow Wyatt to be a baby and start to interact like a baby should. 

Since birth, Wyatt has proven his strength & has amazed the doctors with his progress. Wyatt is such a strong willed, tenacious, and courageous little Warrior with so much fight in him.  Sarah, Jeff, and Wyatt have a long road ahead of them. This strong, loving and resilient family will fight in every way imaginable for their little warrior. Wyatt’s journey is not exclusive to him alone and this battle is unfortunately coupled with a severe financial burden. Sarah has been living away from home for 4 months and will continue to do so until Wyatt can come home. Sarah will most likely have to give up her job to stay home and care for Wyatt. Wyatt still has 3-5 more months before he comes home, leaving Sarah away from her family and loved ones during the holiday season so she can continued to be by Wyatt's side. 

Please find it in your hearts to help this family and allow Wyatt to have a fighting chance.  Any little bit helps and is greatly appreciated. We are asking for any help you'd like to give, even if it's just sharing this page. We appreciate the love and support you have all given our little Warrior.  Love to you all. Thank you from the bottom of our hearts for all of your support. Please pray with us as we continue to embark on this journey.
 
"Don't be afraid, because I am with you. Don't be intimidated, I am your God. I will strengthen you. I will help you. I will support you with my righteous right hand." -- Isaiah 41.10

Please continue to follow our journey: 
Facebook: Wyatt's Journey through CDH
Sarah's Blog: https://ourtinyhero.wordpress.com/
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Organizer

Sarah Robson 
Organizer
Geneva, NY
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