When Christmas morning dawns at the Lairson’s home, the greatest gift won’t be nestled under the tree. Instead he’ll be sleeping in a crib in a room down the hallway with a ventilator rhythmically rising and falling and a nurse watching over him.
After nearly a year of wrangling with doctors, specialists, insurance officials, and social workers, Amber and Cliff Lairson finally won their fight and brought their 17-month-old son Preston home to Turlock in early December.
“Waking up Christmas morning with all of us together under the same roof, is going to be such a blessing,” Cliff said.
Preston is the couple’s third child — joining daughters Chloe, 7, and Avery, 4. The couple was ecstatic when they learned they were expecting and were preparing for their new bundle of joy when a diagnosis swept the ground out from underneath them.
A sonogram during Amber’s 23rd week revealed a birth defect that doctors quickly diagnosed as spina bifida.
Spina bifida is a condition in which the spinal cord and backbone don’t close before birth, leaving an open area. The condition usually occurs at the end of the first month and can vary in severity. Some cases can be treated fairly easy, while others, like Preston’s case, can cause severe complications. The underlying cause of spina bifida remains unknown. Some research has suggested genes play a role, while other evidence points to outside factors like the mother’s health and environment.
“The diagnosis at first was overwhelming,” Amber said. “There were a lot of days and nights of tears. The first option that was given to us was to abort, but that was never a choice for us. We decided that we would make ourselves as knowledgeable as we could be and pray for the best. We knew he was going to be a very fragile case.”
When Preston was born the Lairsons learned the complications were greater than expected. The spina bifida had pulled down on Preston’s cerebellum, causing a Chiari malformation. As a result, the newborn was diagnosed with breathing apnea and he didn’t possess the ability to swallow and was placed on a ventilator and given a feeding tube.
“I remember we went into a room and there were 10 different doctors sitting around a table and they handed us a box of tissues and started talking to us about pulling the plug,” Cliff said. “I said right then, ‘don’t ever mention that again. He’s staying with us until the good Lord decides to take him.’”
Preston underwent several successive surgeries, including the placement of a shunt and a tracheotomy. At the age of 6 months he was transferred from the University of California San Francisco hospital to a long-term care facility in the Bay Area, where the Lairson’s were told he would likely remain for the rest of his life, however long that might be.
“It was heartbreaking,” Amber recalled. “You don’t expect to have a baby and not come home with him.”
The Lairsons were not satisfied with the quality of care at the facility and when Preston developed two hernias they upped their efforts and successfully had him moved to another care facility in the Bay Area, one that specializes in the long-term care of children.
But the experience of the first facility left the Lairsons with bad memories and they said they started to have the initial inklings that Preston would be better off at home. However, they were a long ways from making that step.
“The second place was a great facility and had a lot more parent involvement, but it still wasn’t home,” Amber said. “We were constantly feeling torn between spending time with Preston and spending time at home with the girls. There were many nights spent crying.”
“We wanted our family to be together,” Cliff said. “We knew our lives would still be crazy, but at least we would all be together and here at home.”Bringing Preston home
The couple was about to begin a journey that would test their patience, determination, and fortitude. The hurdles to bring Preston home were many and at times seemed insurmountable. Initially his doctors rejected the idea flat out, but the Lairsons are nothing if not persistent. Amber Lairson worked tirelessly to line up 24/7 nursing care at their home and to bring in all the medical equipment Preston requires, which included finding a company that would regularly service his ventilator, a challenge the family faced when they learned Turlock was not in any service area. It was just a stroke of good fortune that one company decided to expand their territory to include Turlock. Together the couple would spend long days learning all the medical techniques they would need to know in order to care for their son.
“We’re like nurses without the degree,” Cliff joked.
Challenge after challenge would arise for the Lairson family, but resigning themselves to the status quo was never an option.
“There was always an excuse, there was always something that came up as to why he couldn’t come home,” Amber said. “But he is our child and you do whatever needs to be done for your child.”
When the word finally came that Preston would be coming home, the couple could hardly believe it.
“We didn’t believe it until I walked out that door with him,” Amber said.
Having Preston at home has presented the couple with a new set of challenges. He requires almost a steady stream of feeding and medical care, and though they have nurses coming in for regular shifts, the couple tries to take on as much of the responsibility for his care as they can handle.
“It’s like having a new baby, but with 10 times the work,” Amber said. “But I don’t feel like it’s a job.”
The pay-off for all their efforts is sublime, Cliff said.
“I love that I can go in his room and see him any time I choose,” he said. “Kissing him in the morning before I go to work is one of the highlights of my day.”
Those moments of joy are precious to the couple, especially when they are punctuated by nightmarish moments like the one the couple experienced just a week after bringing Preston home. In the early hours of the morning the alarm on Preston’s ventilator started sounding and the couple discovered a blockage in his trachea was cutting off his oxygen supply.
“It was intense,” Amber recalled. “We had to perform an emergency trachea change. He was turning blue and we were bagging him. We were seconds from calling 911 when it all started working again.”
It was a sobering reminder of just how precarious Preston’s situation is, Amber said.
“He could do that at any time,” she said. “We know that he can go at any time.”
The struggles for the Lairson family are never out of mind. They’re trying to save money for a van so they can easier transport Preston and his ventilator and the nurse on duty. The couple also acknowledges the situation has had a big effect on their two girls.
“They do have more security issues, but we always try to be honest with them,” Amber said.
The prognosis for Preston remains an uncertainty, but whatever may lie ahead, it is certain his parents will never give up hoping for their son.
“We know in our hearts that he is making progress,” Amber said. “There are still so many unknowns, especially with the brain.”
“He’ll have the best quality of life we can give him,” Cliff said. “We pray every day to God to heal our son. He’s taken Preston this far. Who knows what the future will bring.”
To contact Sabra Stafford, e-mail firstname.lastname@example.org or call 634-9141 ext. 2002.