Unborn baby with Potter’s syndrome surrounded with love, prayers, music

Unborn baby with Potter’s syndrome surrounded with love, prayers, music

Royce Hood sings the song he wrote to his wife, Elise, and their unborn son, Fulton Joseph, in this undated photo. Due March 31, 2021, the baby has a 5 percent chance of survival after birth due to Potter's syndrome, which means he doesn't have kidneys. (Credit: CNS photo/Handout via The Catholic Post.)

Even though he hasn't been born yet, Fulton Joseph Hood of Dunlap, Illinois, has showered blessings on his parents, Royce and Elise, and five older siblings. He also has also made friends around the world, who have joined the Hoods in praying for a miracle.

PEORIA, Illinois — Even though he hasn’t been born yet, Fulton Joseph Hood of Dunlap, Illinois, has showered blessings on his parents, Royce and Elise, and five older siblings.

He also has also made friends around the world, who have joined the Hoods in praying for a miracle.

The prayers are needed because Baby Fulton has Potter’s syndrome, which means he doesn’t have kidneys and there is very little, if any, amniotic fluid to surround him in the uterus. Without that, the lungs don’t develop either.

The Hoods have been told there is only a 5 percent chance their son will survive after birth.

Don’t look for sad faces and gloom in the Hood household, however.

“There’s no question there’s a bit of an emotional roller coaster, but I’ve tried to really think about it as being grateful that the Lord has entrusted us with Fulton’s life,” ” Royce said. “I’m grateful that we get to be stewards and caretakers of this precious life that God has given us. We’re going to surround him by as much love and joy as we can for as long as the Lord gives us with him.”

“I don’t think either of us has dwelled on anything sad for too long,” added Elise. “For us, focusing on blessings and being grateful has really just helped bring about joy during a time that is difficult and sad.”

Helping them to stay focused has been their parish family at St. Jude Church in Peoria, including Father Patrick Henehan, pastor, and Father Andru O’Brien, parochial vicar. The couple said Dominican Sister Maria Christi Nelson, principal of St. Jude School, has been part of their support system, too.

The Hoods received Fulton’s diagnosis following a 20-week sonogram and said their first reaction was shock. Royce added that he was determined to find a way to make things right.

“I don’t know if this is a guy thing, but I’m like if there’s a problem I want to fix it,” he told The Catholic Post, newspaper of the Diocese of Peoria. “OK, he’s got some challenges. We’ll figure this out.”

But before they could get very far, Henehan invited them to St. Jude.

“I’ll never forget that night at the church,” Elise said. “He gave us both Communion. We knelt in front of the altar and he gave us a special blessing. I really truly felt the Blessed Mother and Jesus — they were just so present.”

The Hoods said having that support from their parish priests was “amazing,” and added that it was O’Brien who suggested having people pray to sainthood candidate Archbishop Fulton J. Sheen for his intercession on behalf of little Fulton Joseph.

Born and raised in Peoria, Elise knew about the El Paso, Illinois, native who would become a media pioneer and prolific author. She got reacquainted with Archbishop Sheen when she found some videos of “Life Is Worth Living,” the prelate’s TV series.

“I think all you have to do is watch him one time and you’re kind of hooked,” she said. “He’s such a powerful speaker.”

Another voice of support has been Father Michael Orsi, chaplain at Ave Maria School of Law in Naples, Florida, where the couple met. Elise and Royce, a Florida native, got married Nov. 24, 2012.

Orsi has continued to be a trusted adviser and spiritual mentor, the Hoods said.

Acceptance of their unborn baby’s condition was difficult at first, according to the couple, especially after they found out they didn’t qualify for a study in which they hoped to participate.

“Letting go of that and really just knowing that Fulton is God’s child and really just giving him to God and saying, ‘Your will be done,’ that was really difficult. But it truly also brought a lot of peace at the same time,” Elise told The Post.

She also wanted to enjoy the pregnancy and enjoy having Fulton with them, said Elise, as Fulton’s due date of March 31 approached.

“We all talk to Fulton. We have five other children and they all talk to Fulton and give him hugs on my belly,” she said.

Fulton’s siblings are Ava, 7; Gabriel, 6; Augustine, 4; Leo, who just turned 3; and Royce Aaron, 1. The Hoods told them Fulton’s prognosis right away so they also would have time to process the news and go through everything as a family.

They pray together every night, especially for a miracle for Fulton’s healing.

“I think they know that Fulton might not be here very long, so they’re very wise that way,” Elise said. “They want to make the most of every day.”

She called that joy in appreciating each moment together a blessing, as is the bond the children are creating with their unborn brother.

“It’s just kind of a beautiful witness of faith really. They know and love Fulton and they can’t see him,” Elise said. “They love their brother just like they love each other. It’s beautiful.

Little things have given the family great hope, Royce said. For example, after not showing any signs of significant weight gain for several weeks, Fulton had gained a pound as of Elise’s 37-week ultrasound March 15 and now weighs 3.15 pounds.

A musician since his teen years in Florida, Royce wrote “Fulton’s Song” to grieve and help him wrap his head around what has been happening.

“He was 20 weeks old when we found out he had Potter’s syndrome,” he said, adding that babies can hear at around 18 weeks. “I thought, ‘I need to write a song and sing to him how we feel about him and let him know how unique and special he is.'”

He incorporated Fulton’s heartbeat into the song, which became its metronome and foundation.

“We’ll surround you with all of our love,” the song promises. “We will hold you/until God takes you home.”

Another lyric says, “We want you to know you are a miracle.”

“No matter what, he is a miracle made in the image and likeness of God from the moment he was conceived,” Royce said. “If I could tell him that I would want him to know that.”

Willems is assistant editor and special sections editor at The Catholic Post, newspaper of the Diocese of Peoria.

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