Jackson's Story

On October 12th, 2004, tiny Jackson Lee Graves entered this world eight weeks premature at University Hospital in Little Rock, Arkansas. He was born with an abdominal wall birth defect known as a giant omphalocele, which is a defect at the base of the umbilical cord where an infant’s intestines and some other abdominal organs are in a sac protruding through the defect.

At birth, Jackson weighed three pounds, thirteen ounces. The sac containing his organs had greatly expanded and filled with fluid during pregnancy, causing it to rupture at birth and leave his abdominal organs exposed to infection. Born with his heart slightly out of position, Jackson experienced breathing difficulties caused by his prematurity. He also faced a life-threatening condition causing constriction of the blood vessels to the lungs called persistent pulmonary hypertension (PPHN).

Because of Jackson’s breathing issues, his parents, James and Angie, only heard him cry out one time right after delivery before he was placed on a ventilator. The ruptured sac caused him to be placed in a sterile bag. Jackson was immediately taken to Arkansas Children’s Hospital, where, upon his arrival, he had the first of many surgeries. This one was to repair the torn sac containing his large and small intestines, his stomach, his liver and his spleen. The omphalocele was almost as big as Jackson’s whole body, but he made it through the surgery.

A few hours later, Jackson had his second surgery. Though he was still losing fluids through the repaired sac, Jackson beat the odds and emerged from this second successful surgery four hours later. The doctors discovered the sac was too fragile to repair, so they constructed a sac of pigskin to cover his organs and protect them from infection. They equipped the pigskin sac with loops so that it could be tied up off of his chest and relieve pressure in order to help his lungs and heart to work properly.

The following week, it was determined that Jackson was suffering from Patent Ductus Arteriosus (PDA), a condition where a temporary blood vessel used in the womb fails to close after birth. This condition can sometimes lead to respiratory distress due to blood backing up into the lungs. The doctors were considering performing an operation to close the vessel but hoped to delay the procedure until Jackson was stronger. However, at only nine days old, Jackson’s heart stopped beating because of the PDA. The doctors and nurses resuscitated him, but Jackson needed his third surgery to close the PDA. At ten days old, Jackson had the PDA closure surgery. Just as before, little Jackson pulled through.

Jackson’s condition also caused digestive difficulties. The doctors wanted him to eat and continue to gain weight because eating activates the liver, which can be adversely affected by long periods of receiving only IV fluids for nutrition. Around mid-November, when Jackson was about a month old, the doctors decided it was time to try small amounts of breast milk. This was introduced through a tube into his stomach because he had his breathing tube in his mouth.

After three days of eating small amounts of milk, Jackson suddenly developed a fever and went into septic shock. After doing everything medically possible, the doctors informed James and Angie that they should take this final time with their baby. They rubbed Jackson’s head and whispered to him, which had always brought a positive response from him. Over the next hour and a half, Jackson began to respond. Then the doctors took over, and Jackson rebounded remarkably over the next several days. His doctors readily admitted there was no medical explanation for Jackson’s turnaround that night.

The next month and a half was a wonderful time with Jackson. He had battled swelling from poor kidney function before Thanksgiving, but this problem went away during late November and early December. Jackson could open his eyes and look at himself in the mirror, see his mobile and look at his mom and dad. He could lift his head up a little and turn it as well. Jackson’s omphalocele seemed to be improving. His own skin was growing around the defect, and the doctors were able to move more of his intestines into his body cavity in a fourth surgery, opening the way to eventually repair his defect.

Jackson’s personality also evolved during this time — he threw “fits” (silent ones because of his breathing tube). He was weaned off of almost all medications so he could stay awake more and was almost off of his ventilator. He even felt good enough to try to pull out his breathing tube or feeding tube at times. Finally, Jackson’s parents were at last able to occasionally hold him, and he loved it. He would snuggle into the crook of their arms and smile at them around the tubes in his mouth.

Jackson’s doctors were happy with his progress, but eating still remained a challenge. Various adjustments were made, but each time Jackson began eating for a few days, another infection would set in and he would have to stop eating and start the whole process over again. By late January 2005, the effects of the IV fluids finally caught up with him. His liver function began to deteriorate, and though the doctors tried various procedures and medication to help Jackson digest milk, they were unsuccessful. Although they had hoped to either get him eating or postpone performing surgery on his bowels until he was at least six months old, a fifth surgery was critical.

On February 18, the doctors performed exploratory surgery to discover what was going on in the sac holding his intestines and repair any problems. During the lengthy procedure, the doctors were disappointed to find that Jackson’s intestines were sticking to the inside of the sac and were also stuck together. They did their best to separate his bowels, which apparently had caused his feeding problems. They also observed that his liver was very inflamed — the size of a grapefruit. Nevertheless, Jackson’s surgery went well. He once again came through it with flying colors.

However, later that day, Jackson developed abdominal compartment syndrome, which is pressure caused by swelling of the organs following surgery. This put pressure on his kidneys and lungs, which had always been weak. A sixth surgery was performed to release the pressure, and he began dialysis for his kidneys. He rebounded for a while over the next 24 hours and appeared ready to make another of his dramatic comebacks. As that day progressed, however, Jackson slowly and steadily began having difficulty breathing. Jackson was beginning to slip away. Finally, at 4:45pm on February 19th, the battle ended for Jackson Lee Graves. His short life here with his parents and all of the family and friends who traveled his journey with him concluded, and he was welcomed home into the loving arms of Jesus. The race was over, and the victory was his.

Jackson was a fighter. He spent four months and one week at Arkansas Children’s Hospital in Little Rock struggling to overcome his significant health challenges. Throughout it all, he showed a tremendous combination of intelligence, determination, spirit, happiness and love despite being very sick and often in discomfort as a result of all of his many ailments. Jackson’s wonderful and inspirational life — all of which was spent in a neonatal intensive care unit — motivated his parents to do what they can to improve care for children who have extended stays in intensive care, and to improve the experience for the families of those children. Inspired by the fantastic medical care that allowed his parents to spend time with him that they might not otherwise have been blessed enough to have, James and Angie Graves established THE JACKSON L. GRAVES FOUNDATION in memory of their firstborn son.