On July 3, 2017, my sister, Amanda Kapes, of Drums Pennsylvania, found out she was pregnant for the first time and she was ecstatic! In October, she found out she was having a little boy and named him Greyson Carter. Later that month, Greyson was diagnosed with a complex congenital heart defect, which will require open heart surgery within the first year of his life. This condtion is common in children with Trisomy 21 (Down Syndrome). This finding resulted in the need for genetic testing which revealed that Greyson was also at high risk for having Down Syndrome.
While Greyson was not due to be born until March 16th, on the morning of January 5th, Amanda noticed that Greyson was not actively kicking as usual. She was referred to her local OB doctor who determined Greyson was in distress. Amanda was emergently transferred by ambulance from Wilkes Barre General Hospital to Geisinger Medical Center for further evaluation.
Once there, Greyson was initially stable on the fetal monitor but at approximately 6:30PM, he went into severe fetal distress and his heart rate plummeted. Amanda was immediately taken to the operating room for an emergency C-section under general anesthesia. Greyson was delivered in under one minute and was born at 6:37 PM weighing only 2lb 9oz and measuring 12 inches long.
The neonatologist and medical team were very optimistic about Greyson's outlook as a 30 week old preemie. Amanda tolerated the surgery well but unfortunately she was not able to witness Greyson's birth or see him for the first time until the following morning.
The next morning, January 6th, Greyson's labwork came back showing critical numbers, specifically his white blood cell count which should have been 10,000 was 136,000. The neonatologist informed us that this was caused by Transient Myeloproliferative Disorder (TMD), a form of life-threatening leukemia found in infants with Down Syndrome. The excessive cells had caused liver damage as well as blood clots in his heart and liver. Greyson needed immediate chemotherapy but this treatment was only available at the Children's Hospital of Philadelphia (CHOP). The doctors felt time was of the essence and the sooner they could transfer him, the better his chances of survival.
Late that night in the bitter cold with gusty winds, Greyson was life-flighted to CHOP in an attempt to save his life. Amanda was discharged prior to 24 hours post op surgery to try to get to her son. The three hour car ride without pain medicine made for an impossible journey. With the help of family nearby, Amanda and my mom arrived at CHOP the next morning.
Since then, Greyson's journey has been marked by miracle upon miracle. God has seen him through so much. He has sustained his life and is healing him day by day. We give God all the glory, thanks, and praise. My nephew has a long road ahead, but he is a little fighter and every day he amazes us!
Amanda and my mom are staying at the Sheraton hotel through Ronald McDonald House Charities, so they can be with Greyson as much as possible. Amanda has taken extended leave from work and it is projected Greyson will remain in hospital care for months.
Anything you are able to bless Greyson and Amanda with would be so helpful to them. More than anything else though, we ask for your prayers for Greyson for healing and strength.
The address where Greyson’s momma, Amanda and Greyson’s Grandma, Ann are staying at is: Sheraton Philadelphia University City Hotel 3549 Chestnut St, Philadelphia, PA 19140
Updates on Greyson can be found on Facebook at: https://www.facebook.com/Pray-For-Greyson-K-430763394005960/
Our family greatly thanks you for your love and support through this trying time. God Bless.