When Alex and Charlotte Clark took baby Rex to the pediatrician for his 2-month checkup, they were a little worried that Rex wasn’t yet holding up his head or moving very much.
Rex was lying on his back, Alex said, and the pediatrician “picked his arms up in the air and then let go of them. When he let them go, they just flopped back down.” The doctor suddenly became very serious.
After a week of medical tests and a stay at Levine Children’s Hospital in Charlotte, baby Rex was diagnosed with a genetic condition that Alex and Charlotte had never heard of: spinal muscular atrophy, or SMA.
SMA — commonly known as “floppy baby syndrome” — is a genetic motor neuron disease that affects the ability to use muscles that control the head, arms and legs and others, and even to breathe.
The Clarks, who live in a rural area off S.C. 55 west of Clover, also learned that there is no cure for SMA. They were told that babies diagnosed with Type 1 SMA — the type of the condition that Rex has — do not survive for long.
“When we went into the hospital the first time, we left knowing that his life span would be drastically shortened — we were told about eight months to two years,” said Charlotte, 27.
The couple, unprepared for such a blow to their young family, have focused on loving the miracle of life that is Rex rather than grieving over the certain likelihood that it will be a short life.
“I don’t understand this,” said Alex. “We’ve been through fits of anger and crying. But we’re not going to waste the time that we have with him screaming about the time we’re not going to have with him.”
Most newborn babies diagnosed with Type 1 SMA die of respiratory failure. Other types of SMA, which can also affect older children and even adults, are less severe, but are still disabling.
Charlotte quit her full-time job as a staff assistant at an insurance company to care for Rex, who needs around-the-clock care. He is the couple’s only son. Alex has two sons from a previous marriage, Austin, 11, and Gabe, 9.
Rex looks like a normal baby lying on a pillow, but he doesn’t try to raise his head or roll over. His movements are limited, using only his hands and forearms. He receives oxygen to help him breath, and Charlotte uses a machine to monitor the oxygen level in his blood.
SMA is caused by a missing or abnormal gene which produces a protein that’s critical to the survival of motor neurons. SMA babies, unable to make the protein, suffer muscle weakness as motor neurons shrink and die. Breathing becomes an issue and many babies need equipment to help them breathe.
According to Families of SMA, a national advocacy group that offers education, support and research, about 1 of every 40 people are genetic carriers, but do not have SMA.
In order for a child to be affected, both parents must be carriers of the condition. When both parents carry the abnormal gene, the chance of a baby with the disorder is 25 percent for each pregnancy.
The news has brought times of tears and anger, said Alex, 30, a York County sheriff’s deputy. But he said they’ve also made a commitment to enjoy the time they have.
The Clarks also have made a decision to do what they can to help other families of SMA children. They’ve commited to donate a percentage of money raised for Rex’s medical costs to Families of SMA to help others.
Alex and Charlotte both said their faith in God has been critical to help them face the challenges. And they’ve been blessed by an outpouring of financial and emotional support from family, coworkers, their church and community, who have rallied to help the couple.
Charlotte said God has been the most important factor.
“He has shown us a peace and a hope even in these circumstances,” said Charlotte. “And He has been with us every step of the way . . . There’s a reason for everything, and we may never know what it is.”
The Rev. Chuck Baynard, pastor of Evangelical Presbyterian Church in Clover, said the church of about 50 congregants has tried to help, setting up an account for the family’s medical expenses at Clover Community Bank.
“Every day is a miracle with him,” said Baynard. “It’s a lot of ups and downs.”
But Baynard said Alex and Charlotte have been able to work through initial feelings of anger and denial to get to a place of acceptance. “They’re just thankful they have him at all,” he said.
When Rex was diagnosed, Alex said, he wasn’t moving much, but he was breathing and eating on his own. But within a few weeks, he needed equipment to help him breath and cough.
Alex said Rex was hospitalized for 16 days with pneumonia about one month after his first hospital stay, most of it in an intensive care unit. At that time, a feeding tube was added.
Rex is no longer able to swallow on his own, so Charlotte uses suction tube equipment many times a day to clear the saliva and mucous that collects in his mouth, throat and nose.
The couple also use a cough assist machine that pushes air in and stretches his lungs, forcing him to take deep breaths. He is fed several times a day with the help of the feeding tube.
Despite the need for constant care, Rex seems to be a happy, alert and very content baby, and Charlotte and Alex concentrate on enjoying his smiles and baby coos and gurgles.
“We are grateful that he is very alert and he’s not in any pain,” Alex said. “It’s heartbreaking to watch him, but when you think about it from his perspective, he knows that he’s loved.”