January 2012 offered a new beginning to Chesterfield residents Amanda and Benjamin Muncy. The young couple, who were married in 2009, had made it through two years of personal struggles and had just heard the delightful news that they were going to be parents. Joy and excitement poured into their life as they anxiously awaited the arrival of the newest member of the family.
At 16 weeks along, Amanda underwent a routine blood test that came back positive for a neural tube defect. Amanda being a labor and delivery nurse, knew that these types of test had a history of giving false positives and was hopeful as the two were sent to a specialist for an ultrasound. As the physician came into the room and delivered the news that their unborn child in fact had a disorder known as Anencephaly, Amanda burst into tears. “ Being a labor and delivery nurse, I knew right away what the doctor was talking about,” she says. Benjamin on the other hand had no idea that this was a devastating disorder. “I knew it was bad because of Amanda’s reaction, but I didn’t know immediately what it was,” he shares.
Anencephaly is a cephalic disorder that results from a neural tube defect. It occurs when the cephalic (head) end of the neural tube fails to close. The resulting affects are the absence of a major portion of the brain, skull and scalp. With very few exceptions, most babies with this genetic disorder do not survive birth, and if so, only live for a brief time after delivery. This was a devastating blow to the young couple.
The Muncys have a very strong faith and relied heavily on it during their entire journey. As they went home and the news sunk in, they began to pray without ceasing. They prayed for time with their baby, they prayed for total healing. Amanda called the doctor to get the sex of the baby, they wanted to name the child. They received the news that they were expecting a baby boy and named him Noah. “I knew God would reveal his plan and why this was happening,” says Benjamin.
“I made it my purpose everyday to talk to him and talk about him. We took a lot of pictures while I was pregnant and made it a point to make as many memories as we could,” says Amanda. She adds, “ I made sure that I had that connection with him throughout the pregnancy because I didn’t know how long he would be in our lives. Everyday that I woke up I was thankful I had another day with him.”
“Planning for the delivery kept me going. I kept saying we are going to make it through,” shares Amanda. However, there were times when it became difficult. “Being a labor and delivery nurse I would go to work everyday to help deliver happy, healthy babies. That was hard. I worked up until two weeks before I delivered so I was huge, of course,” she says laughing. “ It was a little difficult when strangers would ask if we were ready for the baby to arrive. I would just smile and say, yes, we are ready for him to get here.”
“We had and still have an incredible support system. So many people prayed for Noah and for us,” Benjamin says. He adds, “It was hard at times. You have all this support around you during the day, but at night when it was just the two of us it could get tough. You think the mountain is too big to get to the other side, we leaned on each other and lifted each other up.”
The big day arrived and Amanda and Benjamin both say that they were totally at peace. “We stepped out on our faith [and] we prayed for just 20 minutes with Noah after the delivery, but we still put the car seat in the car to bring him home. We knew it could be the end,” says Benjamin. “I was blessed to be able to deliver him at my home hospital and as I walked through the doors that I passed through on my daily walk into work, I thought to myself that this was the last time I would walk through those doors with Noah,” adds Amanda.
Noah Andrew Muncy was born on Friday, Oct.5, 2012. He weighed in at a healthy 6 pounds 3 and a half ounces and measured 17 inches long. Amanda was able to hand pick her delivery team so that all of the people in the delivery room were invested in Noah. “Within two minutes after the delivery he was in our arms; we didn’t know how much time we would have with him,” says Amanda. Noah’s breathing and heart rate were that of a healthy baby and continued that way for the next 24 hours. “You just go from heart rate check to heart rate check. By the next day we had relaxed a little and were able to enjoy him,” says Benjamin.
Sunday came and the big news was they were going to be able to take Noah home. “Until we walked out the door with him, we couldn’t believe it,” says Amanda. She adds, “Someone was always holding him. Our family and friends were constantly there to help and we also wanted them to get to know Noah. They deserved a part in his story too.” As the week went on, Noah became progressively more active. To help keep family members updated the Muncys started “Our Time with Noah” on Facebook. Within one week they had over 20,000 likes.
The Muncys also had the help of Central Virginia’s only pediatric hospice and palliative care program, coincidentally named Noah’s Children. The team at Noah’s Children consist of physicians, nurses, social workers, spiritual care experts and volunteers. “Noah’s Children was amazing. They were calling and texting everyday, even the pediatrician. Dr.Archuleta (the founding member of the program) came by to check on Noah. They were so wonderful and did as much or as little as we wanted, they let you be in control of the care,” say the Muncy’s.
“Everything was a celebration,” Benjamin says. Adding, “We didn’t think about anything else but Noah. We had such a support system that we didn’t have to do anything but focus on him. The laundry was done, the grass was cut and we were fed. We were able to be in the moment at all times. God had His hand on us.”
The Muncys made sure to give Noah as many experiences as possible. They took him for walks, to Babies R’ Us and even celebrated his one week birthday with a cake. “ I just wanted him to make it to Sunday,” says Amanda. “ It was important to us to be able to take him to church. God gave us so much time with him and we were so thankful,” she adds.
“I got to do everything that I desperately wanted to do with him,” says Amanda. “Your relationship with God is so different when you see His presence on a daily basis. There are so many stories that I could tell you, it was a miracle,” adds Benjamin.
“If you put enough faith in God and seek Him with everything that you have, if you step out on your faith, God will provide. You don’t know what the miracle will look like. We prayed hard everyday,” Benjamin says. He adds, “ Fifteen days was far beyond what we ever imagined. Seek God with all of your heart and your rewards will be unimaginable.”
Noah Andrew Muncy passed peacefully away on Oct. 20, 2012 in the arms of his parents; he was 15 days old. “We were so blessed to be his parents,” say the Muncys.
“Of course this is a sad story, but he was mine, we got him, no one else,” says Amanda. She adds, “ You find a new normal. It’s become a benchmark in our life, before Noah and after Noah, it will never be what it was before. I have no choice but to get up everyday and pick up the pieces, I just carry them with me.”
Benjamin shares, “This is not the end of the story. Our prayer now is that God will continue to use Noah in people’s lives and to get a clear direction on where to go.”
You can visit the Muncys Facebook page, “Our Time with Noah” to see pictures of Noah on his many adventures with his family.
To learn more about Noah’s Children please visit www.noahschildren.com .