Amy McGahee looks at a photo of her infant son, Ray, reaching out and touching her face.

It was taken after his birth last September and the photo brings her so much joy, McGahee explains, because Ray died shortly after it was taken.

Ray Josiah Luby had Trisomy 18, a chromosomal defect that affects one out of every 3,000 live births.

He lived just 7 hours, but for McGahee, those were 7 hours of bliss.

“When I first heard him cry, I said ‘Thank you God!’ I didn’t know if he was going to make it out alive,” McGahee said. “I tried not to focus on the fact that he was going to die, but that he was alive.”

Fifty percent of Trisomy 18 babies carried to term are stillborn and that number is even higher among boys, according to the Trisomy 18 Foundation website. Babies born with Trisomy 18 can have any number of problems from heart defects to kidney problems to severe developmental delays. McGahee knew her son had a number of these problems, including a hole in his heart, so the Westminster resident was thrilled with the time she had with Ray.

“I sang to him and held him. There was no way I was going to put him down,” she explained. “I didn’t know if I was going to have him one more minute or one more hour. The not knowing was the hard part.”

Most mothers who find out they are carrying a baby with Trisomy 18 make a different choice than McGahee, according to Dr. Pedro Arrabal, director of Maternal Fetal Medicine at Sinai Hospital and the specialist who worked with McGahee.

“The great majority of women, more than 90 percent, who get a diagnosis like this will terminate the pregnancy,” Arrabal said. “In Amy’s situation we gave her all the options, and she made what I consider to be a courageous decision to continue the pregnancy. It was the right fit for her.”

McGahee, who has four other children ranging in age from 2 to 25, learned that all might not be right with her pregnancy when she went to her obstetrician for a sonogram at four months. The technician couldn’t see all the organs, but McGahee’s doctor wasn’t concerned. McGahee, on the other hand, was worried, and was referred to Sinai for another ultrasound. It was there that it was determined the baby had Trisomy 18 which, according to Arrabal, is the second most common chromosomal abnormality in live births behind Down Syndrome.

Babies with Trisomy 18 have three No. 18 chromosomes instead of two. The genetic material from the extra chromosome can cause a variety of problems with varying severity. Less than 10 percent of babies live to their first birthday, according to the Trisomy 18 Foundation.

Things did not look good for McGahee’s baby, and she was told that there was a 70 percent chance her baby was going to die inside her, she said. They told her to start planning the funeral, she said, but soon after the diagnosis, she felt the baby move for the first time.

“I was so upset. I was feeling him moving. How was he moving if he was going to die?” she wondered.
McGahee never considered having an abortion.

“I believe in God. It’s God’s decision when he lives and when he dies. Who am I to say,” she said. “I wanted to give him every chance and opportunity at life.”

In the back of her mind, McGahee said she always hoped a miracle would happen, even though she knew she couldn’t convince herself of that. She tried to accept what was going to happen and just hoped for the best.

Meanwhile, she struggled with how to answer when people asked her when she was due. Eventually, she would just explain that her son was going to pass away.

“It’s something you just say, even though you can’t really grasp it,” she explained. And some reactions were hard to take.

“People said some really crazy things or they didn’t speak to me for months.”

They didn’t understand why she would put herself through this if the baby was just going to die, she said.

“I heard this so much. I couldn’t stand it. This was my child, he has a soul. I didn’t love him any differently than the rest of my kids,” she explained. “You go through this because it’s your child, your flesh and blood.”

Every week during the pregnancy — which was difficult and uncomfortable because of excessive fluid — McGahee had a sonogram.

“They let me see him on the screen every week. It was so important to me because it might be the last time I got to see him,” she said.

Then she went into labor at 35 weeks while on the way to the hospital for fluid reduction. She had already discussed her wishes with all those at Sinai who would be involved in the delivery, and everything went as smoothly as possible, she said. She delivered by C-section and her daughter was with her along with a professional photographer from Ellicott City, Desiree Hopf, who donated her services to record the birth of little Ray.

“When I first saw him, he was so beautiful. I didn’t see what was wrong, just that he was beautiful,” McGahee said.

She spent the next seven hours alone with her baby. She didn’t want anyone else there.

“I didn’t know how long I would have with him. I didn’t want to share. I know that sounds selfish, but I’m his mother,” she said. “There is nothing more precious than holding your child.”

McGahee fingers charms hanging around her neck. They hold two pictures of Ray. Someone gave her the charms and, like the photographer, it was someone she didn’t even know but someone who wanted to help.

“That’s what gives me joy. They gave to me and have blessed me so much,” she said, looking at a book of pictures taken by Hopf. “I can sit here and look at him and share him. It makes it real.”

It’s been 10 months since Ray died, and now McGahee is thinking about how she might be able to help someone in a similar circumstance. She’s just not sure how yet.

“God blessed me with him and gave me seven hours with him. I feel like God chose me to be his mom. I just don’t know the reason. He was a gift.”

For more information about Trisomy 18 or for support visit www.trisomy18.org or www.trisomy18support.org.