Couple says daughter with fatal prognosis is a gift from God

 

By Jessica A. Botelho, Staff Reporter, The Rhode Island Catholic

When she was four months pregnant with Angela, doctors told Sonia and her husband Rony Morales that their baby has anencephaly, a fatal birth defect that occurs during embryonic development.  While doctors said Angela would likely be stillborn, she is now nearly three-weeks-old. Photo: Jessica A. Botelho

When she was four months pregnant with Angela, doctors told Sonia and her husband Rony Morales that their baby has anencephaly, a fatal birth defect that occurs during embryonic development. While doctors said Angela would likely be stillborn, she is now nearly three-weeks-old.
Photo: Jessica A. Botelho

PROVIDENCE — The news for Sonia and Rony Morales was grim. At her 16-week ultrasound appointment five months ago, doctors informed Sonia that her baby has anencephaly, a neural tube defect in which portions of the brain, skull and scalp do not form in whole or in part during embryonic development.

According to the National Institute of Neurological Disorders and Stroke (NINDS), there is no cure or standard treatment.

Counselors at the hospital expressed to Sonia that most people in her situation elect to have an abortion, she said, as a majority of babies with anencephaly are stillborn or die within minutes or hours of birth. But Sonia and Rony, parishioners of Our Lady of Mount Carmel Church in Providence, said they never considered abortion as an option.

“They told me, ‘you have two choices. You can terminate the pregnancy or continue it, but know that the baby will not live long,’” Morales said at her home during an interview with The Rhode Island Catholic on March 28, just days after her baby was born. “I don’t understand how parents can kill a baby inside of the womb because the baby is missing something.”

On March 23, Sonia and Rony welcomed a six-pound baby girl to the world. They named her Angela, and had her baptized at the hospital 20 minutes after her birth.

“This is the meaning of pure, unconditional love,” Sonia Morales said while holding Angela.

Babies born with anencephaly are “usually blind, deaf, unconscious, and unable to feel pain,” NINDS reports, adding that “although some individuals with anencephaly may be born with a rudimentary brain stem, the lack of a functioning cerebrum permanently rules out the possibility of ever gaining consciousness. Reflex actions such as breathing and responses to sound or touch may occur.”

Yet, Morales later reported, Angela passed a hearing test, and opened her right eye when she was nine-days-old.

“She does so many things doctors say she wouldn’t do,” she said. “She snores, she burps, [and] she eats. First, she started eating with a syringe, but now she’s taking a bottle and drinking [up to two-and-a-half ounces of] breast milk.”

While Angela seems to be making progress, there are also setbacks. She’s been having trouble breathing, and doctors are unable to treat infants experiencing anencephaly.

“The doctor said, ‘we can’t give you treatment for her because it is rare that babies who have anencephaly are born alive. Most parents don’t carry them full-term,’” Morales said. “They don’t even know how the baby is alive still.”

Feeling frustrated, the mother turned to the Internet for more information. She also started a Facebook account not only to promote anencephaly awareness, but also defend human life.

“I want people to know that we have to be pro-life,” she said.

“Even if a baby has no hands or feet or a brain, she still has the same rights as any child. If a four-year-old child becomes brain dead or if they have to amputate their legs, you are not going to kill that child.”

Since creating the account mid-January, more than 1,000 people have “Liked” the page. Morales said many of her posts have been shared, with the potential of reaching at least 22,000 people.

“Angela is touching many people,” she said. “We don’t regret that we carried her full-term. It’s so hard, but it’s worth it because you get the chance to hold her in your arms. We are in love with her.”

Still, the journey hasn’t been easy. Morales did nothing but cry for two weeks following the diagnosis. She worried about her unborn child, as well as struggled with whether she and Rony should tell their four-year-old daughter, Elizabeth.

But her husband’s kind words and encouragement pulled her from despair.

“He said, ‘we have to be strong. The baby is inside you and feeling everything that you are feeling,’” said Morales, noting that they began talking and singing to Angela while she was still in the womb. “I felt her moving; she was responding to our love.”

Family, friends, fellow parishioners, as well as members of non-profit programs led by the Diocese of Providence, have been praying for them. Carol Owens, the director of the Office of Life and Family for the diocese, has been in contact with the Morales family. With the help of a volunteer, Owens connected them to “My Child…My Gift,” a poor-prenatal diagnosis ministry that offers spiritual counseling and other services. It’s supported by the Catholic Charity Appeal Fund, and adopted from the national program, “Be Not Afraid.”

Owens, along with Judy Costa, a volunteer for “My Child…My Gift,” are optimistic Angela will live, and praised Sonia as an “incredible woman of faith.” But they also wonder why doctors aren’t doing more to help.

“This baby has survived all odds; the will of God is overpowering this whole situation,” Owens said. “I don’t understand why she’s not being treated as if she’s going to live. Is this what the medical field is telling us? Once they think death is imminent, nothing is done?”

Costa, who introduced Morales to another mother who experienced a poor-prenatal diagnosis, hopes to help secure Angela an appointment with a neurologist. She thinks doctors should at least be looking into the possibility that her diagnosis isn’t as severe as they first thought.

“Maybe she has a lot more brain function than they are giving her credit for,” said Costa.

Aside from emotional and spiritual support, Owens and Costa said the diocese also plans to fund funeral and burial arrangements in the event of Angela’s passing. Sonia and Rony are grateful for the support, and wish more people were as compassionate.

“Some people who don’t have a connection to God were asking me, ‘why are you going to carry her full-term? It’s going to be too much suffering for you,’” Morales said. “I said, ‘babies are not toys that are broken that you throw away. The suffering will be more if I terminate the life of my own child.’”

Morales said there was nothing to gain by ending the pregnancy, but a great deal to lose. She and Rony wouldn’t imagine causing their baby to die without giving her a chance to live.

“I know that God is going to take care of her,” she said. “God still has her here because she hasn’t finished her mission. She came to the earth for a reason and she’s going to complete everything before she goes back to our father. God is in control. He is the one who is giving us the strength.”

For more information about services that the Office of Life and Family offers, call Carol Owens at 421-7833, extension 218. To make a donation to Angela’s “GoFundMe” account, visit gofundme.com/OURBABYANGELA.

Editor’s note. This first appeared at www.thericatholic.com/news/detail.html?sub_id=6521