New life for ‘Joy boy’
Like most new parents, Gabe and Natalie Corbett of Henrico have had to endure more than a few sleepless nights, dry many a tear and soothe many a bedtime fear during their son’s first year.
Like most new parents, they are also adapting to a considerably tighter budget than what they knew before Isaac was born in October 2010.
But unlike most new parents, their big expenses are not strollers and cribs and diapers. They are hospital bills.
As for the sleepless hours, night-time terrors and long crying spells, they are not Isaac’s.
The tears and fears that keep them awake are their own.
Last September, just a few days before his first birthday, Isaac was diagnosed with a rare genetic disorder called mucopolysaccharidosis (MPS Type 1).
Because both parents are carriers of lower-than-normal levels of a specific enzyme, Isaac lacks the enzyme, which is needed to break down complex mucus-like sugar molecules called mucopolysaccharides. The molecules then build up in the body and wreak havoc on organs and tissues throughout the body.
There is no cure, and on the spectrum of severity of the disease, Isaac has the most severe form known as Hurler’s Syndrome.
Most children, the Corbetts have been told, die from this disease by the age of 10. The day she received that diagnosis, says Natalie, will “forever be engraved in my mind as the worst day of my life. . . . [The news produced] one of those near out-of-body experiences where I struggled to realize that this was real and not some nightmare I was having.”
As for Gabe, he described the diagnosis as something resembling “more like a sick nightmare or a movie synopsis that you would never even want to think about.”
“We both couldn’t sleep at night more than a couple of hours at a time,” recalls Gabe of the days following the diagnosis. “We’d wake up in tears, and try to keep the sobbing down in case the other one of us was able to sleep. Every time we were in the shower or driving, we would just start bawling.”
In Isaac’s early months, the only signs that something was amiss were a non-stop runny nose and some oddities of his skeletal structure, which were attributed to his upside-down, folded-in-half position in the womb. Weighing almost nine pounds at birth, Isaac had trouble fitting into his mother’s petite 5’3’ frame, and was delivered by C-section. But with only a warning from the doctors to keep an eye on his hips, Isaac was sent home an apparently normal, healthy newborn.
At one of his first check-ups the pediatrician detected a hernia, and the Corbetts were sent to a urologist -- “the beginning of many specialist referrals to come,” says Natalie. At three weeks of age, Isaac had his first surgery to repair an inguinal hernia.
At his one-month appointment, Natalie expressed concern over Isaac’s leg joints and hips, and the Corbetts were sent to an orthopaedic surgeon. Both hips were found to be out of the socket, and Isaac was put into a harness.
The next specialist Isaac saw was a neurologist, who examined his slightly-misshapen head and noted that might need a helmet. But by now the Corbetts had learned that Isaac would need surgery on his left hip, leaving him in a body cast.
“I was beside myself when I heard this news,” says Natalie. “It seemed that our precious little boy couldn’t catch a break. Just when I thought he was going to get out of the harness and be able to move around like a normal baby, I discovered that his movements would be entirely limited . . . for three months.”
Meanwhile, Natalie had gone back to work and Isaac was in day care, exacerbating his already-chronic congestion. When the day came for the surgery, the anesthesiologist had to turn Isaac away due to the risk associated with his congested airway.
Over the next few months the Corbetts saw a succession of specialists, from cardiologists, geneticists, and allergists to craniofacial and ENT doctors. At five months, Isaac’s congestion eased enough for him to have the hip surgery, and he was put in a cast. But he continued to suffer from constant nasal drainage and ear infections, and at eight months, he had tubes inserted in his ears.
“After Isaac’s third surgery – hernia, hip, ear tubes – we started wondering what could be the common link between all of these,” says Gabe, noting that Isaac was averaging two doctor visits a week. “Why does he have such a high palate with thick gums?
“The biggest question was the nose that no one could figure why it kept running. We’d go through two or three boxes of Kleenex a week; [his nose] was red-raw all the time.”
The body cast was replaced with a brace, but Isaac’s skeletal challenges continued. At 10 months, he was significantly delayed in development, and could still not crawl, roll over, or come to a sitting position. After analyzing a full spinal MRI, the neurosurgeon suggested that Isaac might need surgery to remove part of the first vertebra in his neck and create more space.
It was at a follow-up visit with the geneticist, after blood tests had been done on all three Corbetts, that the doctors pinpointed the problem and delivered the devastating diagnosis.
Although MPS has no cure, Duke University Medical Center is one of two hospitals in the U.S. that has had some success with bone marrow transplants for MPS Type 1 children. Gabe’s father, Dr. Eugene Corbett at University of Virginia, began researching the process from the moment of diagnosis. Within a week -- a week in which they had
planned to celebrate Isaac’s first birthday – the Corbetts had moved into the Ronald McDonald House at Duke.
Over the next month, Isaac had his adenoids out, his nasal passages enlarged, a shunt inserted into his brain, and a central line installed to transmit chemo and drugs. Complications from the line placement surgery landed him in intensive care on a ventilator for two days, and required extra time to heal before he was ready for the nine days of chemo that prepared him for the transplant. But in December, he received a bone marrow transplant from a cord blood donor.
Throughout all the pain and uncomfortable side effects, says Natalie, “Isaac continued to be our little joy boy.” Nurses and doctors loved coming into his room, she says, because Isaac would greet them with a giant smile and silly laugh.
“We always joked that Isaac never learned to blow bubbles or raspberries because his lips were never closed,” Natalie says. “He loves to smile and laugh more than anything, which is quite fitting considering that his name means ‘laughter.’ . . . He has amazed many people with his incredible attitude.”
Becoming ‘clean freaks’
After a couple of months in the hospital, Isaac was discharged, and his parents could care for him in their Durham apartment. In addition to three medications requiring infusions that they have to give Isaac each morning and night, they have 10 oral medications and two creams to administer. Because of his compromised immune system, Isaac has to remain in the apartment at all times, except for clinic visits.
“He wears a mask any time he’s outside of the apartment,” explains Gabe, “and we have become clean freaks.”
Until the day that Isaac is cleared to go back to Richmond -- possibly in late spring -- the Corbetts have adopted a grueling routine. They try to get to bed by 10, because Isaac wakes up once or twice every night needing a feeding, diaper change, and often a bath because he is on so many fluids from IV’s.
Rising at 7 a.m. to warm up the refrigerated IV meds, Isaac’s parents must sterilize a tray, remove air from saline and heparin syringes, prime two IV pumps, and gather all supplies within easy reach.
Before waking Isaac, his parents have also learned to have Cheerios handy to distract him. “He’s a curious kid,” says Gabe, “[and wants to play] with his central line lumens.” It takes 45 minutes to draw blood and administer all Isaac’s morning medications, for which he is rewarded with more Cheerios “for hanging in there with us,” says Gabe.
Meanwhile, Natalie fires up her laptop. Because Gabe has had to leave his job selling real estate, the Corbetts feel fortunate that Natalie is employed by a company that allows her to work remotely.
After breakfast, Gabe runs Isaac through his physical therapy and puts him down for a morning nap. Following the nap, the two either head to the clinic for a visit of two to five hours, or play host to visiting physical, speech, and occupational therapists. Then it’s time for the evening round of IV/oral medication prep.
It’s a schedule that leaves virtually no free time for Isaac’s parents to enjoy as a couple, except when Gabe’s parents visit and they can slip out for a movie. The financial struggles are also daunting, as they continue to maintain the apartment in Durham, Natalie’s place in Chesterfield, and Gabe’s home in Rockett’s Landing -- while the hospital bills mount.
What’s more, the Corbetts have been told by other transplant families that they need to maintain their savings, as they face the possibility of long-term care for Isaac. He will require several more surgeries for his skeletal abnormalities, which will not be helped by the transplant. He will also need extensive physical, occupational, and speech therapy, and may have some eyesight issues and learning disabilities as well.
But you won’t hear Gabe and Natalie complaining.
The Children’s Organ Transplant Association (COTA) is working with them to raise funds for Isaac’s transplant-related medical needs, and Gabe’s sister, Caroline, is working on benefits such as an ice show at Skate Nation and a yard sale at Rockett’s Landing [details below].
Although MPS Type 1 can’t be cured, the bone marrow transplant will save his vital organs. The previously-missing enzyme now resides in his new growing cells, and will not only prevent future build-up of the mucopolysaccharides but also break down those already collected.
“We no longer have to dread birthdays, wondering if this will be his last one,” says Natalie. Isaac has made tremendous progress, and is able now to stand up against the sofa for a minute or two. His perpetual runny nose is gone, he can pick up tiny bits of cereal and feed himself, and he waves bye-bye and plays pat-a-cake.
“The doctors all say that he is a poster child for a successful bone marrow transplant,” reports Natalie. “We are thrilled about the new life these new cells offer our son and we are excited to watch him grow.”
All in all, says Gabe, the experience has helped him realize how precious the opportunity to be a parent is.
“I shudder [when I think] what could have happened if Isaac’s hip doc hadn’t mentioned that we follow up with genetics,” he says, noting that the bone marrow transplant is an option only for children under two. “We probably would not have figured it out until too late.”
In addition, he says, the experience has given both parents a unique sense of perspective.
“I’d like to think it’s made us more patient and understanding, and less caught up in the stuff that doesn’t really matter,” says Gabe. “When your entire life changes in a single phone call, you realize real quick that a lot of your cares, worries, and desires are petty.
“If you have your health, if those you care about have their life and health, we really can live with just about anything else.”
The outpouring of support from friends, family, and “folks we met along the way” has overwhelmed them, says Gabe. “Meals, notes, cards, care packages, advice, babysitting so we could get away for small periods of time, prayers, volunteering, and just general thinking about us. Everyone was anxious to find a way to help us.
“I never felt so alone as when I got the news [of the diagnosis] at 2 p.m. on September 30,” he adds.
“Now I know we’re not."
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