Local family's unborn baby diagnosed with fatal birth defect

PARIS —Cheyenne Lenahan sensed something was wrong as she stared at the ultrasound with a nurse during her 20 week appointment. Five hours later, a doctor confirmed her fears and her family’s life was changed forever.

On an August day, Lenahan, her fiancé, Cody Hope, and their son, Colten, all went to her doctor’s appointment to find out the sex of the baby. Throughout the ultrasound, the nurse seemed concerned and puzzled. Something was obviously wrong, Lenahan said.

Lenahan mentioned to the nurse that the baby didn’t seem very developed, but the nurse wasn’t sure what was going on and didn’t say much. Throughout the ultrasound, they were unable to get a good view of the baby’s face, but they were able to find out they would be welcoming a little girl, which they had planned to keep as a surprise for their family and friends until she was born.

Hours after the appointment, Lenahan was called to come back to the doctor’s office. She was told to bring someone with her.

“At that point I knew it was bad,” she said.

Hope, who had just made it to Flint for work, turned right around to head back for whatever news was to be delivered about their unborn daughter.

When the doctor delivered the diagnosis, Lenahan remembers it as a blur, she said. Only two things the doctor said really stuck with her.

“The doctor told us, ‘Your baby has anencephaly and isn’t going to survive,’” she said. “I’ve never heard of anencephaly, so I start bawling and I’m just staring at him. I have no idea what he’s talking about. When the doctor said that, all I heard was the word anencephaly and that my baby was going to die. I didn’t hear anything after that. I left that office completely lost.”

According to the Centers for Disease Control and Prevention, anencephaly is a neural tube defect which results in a baby being born without parts of the brain and skull. Anencephaly happens if the upper part of the neural tube does completely close, often resulting in a baby being born without the front part of the brain, as well as the thinking and coordinating part of the brain. The remaining parts of the brain are often not covered by bone or skin.

According to the U.S. National Library of Medicine, Anencephaly occurs in about 1 out of 10,000 births. The exact number is unknown, because many of these pregnancies result in miscarriage. There is no cure and babies born with anencephaly typically survive less than a day, although a very small percentage have lived longer.

“Every doctor we’ve talked to has told us she won’t make it, so it’s been a rough road,” Lenahan said.

When diagnosed, the doctors told Lenahan and Hope they had the option to terminate the pregnancy, induce labor or to carry to term. With their faith in God, they knew they would leave it in His hands and let the pregnancy run its natural course, Lenahan said.

Lenahan and Hope have received an outpouring of support from their families, friends and community. Despite the sadness surrounding the circumstances, Hope said it has had some surprising effects.

“It changes you,” he said. “You want to look at the bad things, but you can’t help but see the positives because it’s bringing everyone closer and making us realize what matters. With this going on, we realize she only has so much time.”

“We don’t get years with her,” Lenahan added. “We don’t know whether it will be a minute, an hour or a day, but the nice part is I will get nine months with her. I’m trying to just focus on enjoying that.”

Still, each day is a struggle and filled with many emotions, Hope said. Everything the couple is going through has a different reaction for each of them, and they’ve received advice from friends to remember to stick together and try to understand each other in this difficult time.

The day after finding out about their daughter’s anencephaly, the couple settled on a name – Faith Rose Hope.

Originally, Lenahan had another name in mind, but Faith seemed more fitting, she said.

“It’s perfect for her,” Lenahan smiled. “They say when you believe in faith, miracles happen, and I found that very special.”

Lenahan refuses to give up on her daughter, although she knows the odds are not in her favor.

“I pray she proves all these doctors wrong and she doesn’t have this because I’ve heard cases of them diagnosing it and the children being born healthy,” Lenahan said. “But if that’s not the case, it’s in God’s hands.”

Lenahan and Hope know not many people have heard of anencephaly. They and their families had no clue what the birth defect was when they first received the diagnosis, Hope said.

They now know that neural tube defects often occur before a woman even realizes she is pregnant. Low intake of folic acid before getting pregnant and early in pregnancy increases the risk of neural tube defects, such as anencephaly.

Before she tries to conceive again, doctors have told Lenahan she will need to take at least eight times the recommended amount of folic acid, she said.

The importance of folic acid is one thing Hope and Lenahan think should be more commonly discussed at doctor’s visits. They also hope Faith’s story can raise awareness and reach parents who might be struggling with a similar diagnosis.

“If we could help someone in our community and sit down and talk with them, like our friends who have lost children did for us, that would be something,” Hope said.

“Maybe it’s just making a couple feel like they aren’t alone and it’s not their fault because this unfortunately happens,” Lenahan added. “I just hope that if this happens to anyone else, they’d feel comfortable talking with us.”

Baby Faith is due to arrive on Dec. 30. The family is planning on delivering in Grand Rapids. To help with medical expenses, a golf outing benefit is being held at 11 a.m. on Saturday, Oct. 11 at the Intimidator Golf Course, located at 5898 E. 17 Mile Road.

The cost to play is $60 per person, which includes nine holes of golf, hot dogs and chips for lunch and dinner to follow the event. Raffles and betting holes also will be available for event participants. All proceeds and donations will be put toward medical expenses. To register for the outing, call (231) 679-0448.