Baby Noah is a miracle of life, love and the cross

    In the hands of an experienced physician, the ultrasound is a tool of truth for an expectant mother. As the image of baby Noah, 23 weeks in the womb, came into focus, Rachel Bracey’s world stopped. The truth hurt.
    From her position on the examination table, Rachel saw the specialist shaking his head. He just wouldn’t stop shaking his head.
    “He was just so mind-boggled,” Rachel said. “You could see it in his face and his speech.”
    His sobering words flowed out, unadorned, matter of factly, and they hurt.
    “I’ve never seen anything like this,” he told Rachel and her parents Tim and Brenda. “This child is completely deformed from head to toe. He’s not going to have any quality of life.”
    At that moment, the physician performed quick, medical calculus. Since the baby boy was 23 weeks gestation – too “old” to be aborted in Louisiana – Rachel could go to Houston for the abortion by the following week. That would take care of the problem.
    “Of course, I said no right there because there was a heartbeat,” said Rachel, 25, a 2006 graduate of St. Mary’s Dominican High School. “His heartbeat was the one thing that was perfect. I told the doctor, ‘His heart is strong and he is a person and I already love him. I’m putting this in God’s hands.’”
    When baby Noah was born via Cesarian section at West Jefferson Hospital on May 2, no one had ever seen anything like him. The obstetrician performed CPR to jump-start his heart and to get him to start breathing.
    “All the doctor kept saying was, ‘This poor little boy, this poor little boy,’” Tim Bracey said. “It was one of those most incredible days that you don’t ever want to face. The doctor came to me after and said, ‘I’m not sure I did the right thing, but I saved Noah’s life. I brought Noah back.’”
    Noah’s body was so twisted and his spine so curved in a reverse “C” – the result of an extremely rare congenital condition called arthrogryposis – that the back of his head nearly touched his buttocks. Both legs are disconnected from the hip joints. Noah’s arms are twisted and locked into position. He can move only his head.
    Immediately after the delivery, Rachel, behind her surgical drapes, knew the doctors had taken Noah for emergency procedures.
    “I didn’t hear a cry,” she said. “I remember praying, ‘Please, God, no matter what is wrong with him, just give me a chance to be his mother for however long.’ After they bagged him and I heard him cry, my Mom and I just lost it. It was the smallest cry ever. They let my Mom see him first.”
    Then Rachel’s mother – “balling and crying” – came over to her emotionally spent daughter.
    “I can’t lie to you,” Brenda told her daughter. “I don’t even understand.”
    In the last six months, the mystery of Noah’s life has continued to evolve. Rachel, who keeps constant vigil at his bedside, is the only person besides her parents who can carefully flip Noah every two hours. Rachel used to be such a heavy sleeper she could doze though a hurricane. Now, in the middle of the night, she knows it’s time to get up and flip her baby as a unit – like a pancake.
    “Usually I hear a little whine, and I get up – I don’t know how,” Rachel said. “I guess that’s what happens when you’re a mom. I usually turn him on the other side and he goes right back to sleep. He’s the alarm, for sure.”
    Noah just last week overcame his latest hurdle – a three-week intensive bout with a viral infection that sent him to the NCIU in Children’s Hospital, where he was placed on a ventilator. Last Saturday, Noah beat the odds again when he successfully weaned himself off the ventilator.
    In the spring, Rachel hopes to take Noah to Shriners Hospital in Philadelphia where a specialist in arthrogryposis hopes to be able to treat some of Noah’s skeletal abnormalities with the goal of one day having Noah sit up in a wheelchair.
    Looking back on her teenage years, Rachel recalled how she baby-sat for everyone in the Bracey family and in the neighborhood, perhaps preparing her for this ultimate test. She knows it is difficult for strangers to get past the disabilities and negative prognosis. But what a mother sees is something far different.
    “Other than his physical disabilities, he is so normal,” Rachel said. “He laughs, he talks to you, he smiles. He’s a typical, perfect, little baby. He’s just trapped in a body that’s not working.”
    Tim, his grandfather, has developed a special ability of his own. Grandpa is the best member of the family at getting Noah to sleep. It was difficult at Children’s Hospital, with a ventilator tube down his throat, a feeding tube through his nostril and an IV line through his carotid artery.
    “As I look at him, I say this is the closest to God that I’m going to get on earth,” said Tim, who is an extraordinary minister of holy Communion at Christ the King Parish in Terrytown. “And that’s true. You look at this child’s eyes and see something you’ve never seen before. You wonder about the miracles of life – and he’s one. This child is a miracle every day.”
    Noah graces the 2014 Right to Life calendar – he’s actually the December 2013 baby – and he continues to affect everyone who sees him.
    “You try not to look at this as a cross, but it is,” Tim said. “But you certainly can see the blessings and the miracles. To me, it’s the paradox of the cross. That’s who Jesus was, the paradox of the suffering servant. There is, nonetheless, beauty in that distortion.”
    Noah has begun to coo and babble and is cutting some teeth. Rachel is waiting.
    “When he says ‘Momma,’ I don’t know what I’ll do,” she said. “I’ll probably lose my mind.”
    Peter Finney Jr. can be reached at [email protected].