Home Life

Ethans Struggle
Story by KRISTY ALPERT Illustration by MATHEW VINCENT

A Tarrant County family fights to give their boy a chance at life.

very year, one in every 150 children is diagnosed with autism. One in every 500 newborns suffers from hydrocephalus. Three thousand babies are born with brain damage. Roughly 3 percent of the population is diagnosed with Wol-Parkinson-White syndrome. And a tiny percentage of babies are diagnosed with fetal hydrops, a condition where fluid accumulates in the fetus and half of those babies dont make it. One Keller child has battled all of these disorders.

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Home Life

A NATURAL FIGHTER
his is the story of ethan gilbertyour average non-verbal, autistic, brain-damaged, 10-year-old boy who was diagnosed with sleep apnea, fetal hydrops, hydrocephalus, and Wolff-Parkinson-White syndrome. Ethan Gilbert has always had the unique skill of defying the oddseven before he was born, on Nov. 19, 1999, at Presbyterian Hospital in Dallas. While he was still in the womb, Ethan was diagnosed with a rare form of arrhythmia known as Wolff-Parkinson-White syndrome, which resulted in a dangerously rapid heart rate. Moments later doctors diagnosed him with fetal hydrops, a condition that caused fluid collections in his body to affect his lung and heart function. Ethan desperately needed help. With his cardiologist recommending one solution and his obstetrician another, Ethans parents, Kristi and Tim Gilbert of Keller, were faced with one of the hardest decisions of their young lives. They were concerned because he was going into heart failure, recalls Kristi, now 32. The cardiologist wanted to deliver the baby right away, but the high-risk obstetrician wanted to give him medicine through a shot to decrease his heart rate and then wait six weeks to deliver the baby. The odds were against the Gilberts when they decided to go ahead with the early delivery date. They were told Ethan would have a 50 percent chance of survival if they delivered him early with the emergency C-Section, and a 100 percent chance of survival if he was carried to term with the medicine. We look at it now and think, What parent would choose a 50 percent chance of survival over a 100 percent chance? remembers Kristi. But we just knew we had to get him out. Ten minutes after the decision was made, Kristi was wheeled into the Presby operating room to begin the battle to keep Ethan alive. They did the C-section, but I didnt get to hear him cry, she says. They had to shock his heart several times. And, since they didnt think he was going to make it,

they wheeled me in my hospital bed to see him before he passed. But Ethan surprised everyone by holding on. Five days later Kristi and Tim, now 31, were released from the hospital, leaving Ethan in the hands of the doctors and nurses there so the couple could go home for some much-needed rest. It was so hard leaving him there, because you dont go deliver a baby and not bring him home with you, Kristi says. I hadnt gotten to hold him at all. I hadnt even seen his lips, because they were all taped up with tubes. As the Gilberts were leaving the hospital, the obstetrician stopped them. He told them he had been wrong; Ethans condition was so poor, the doctor doubted he could have been carried to term. There was no way Ethan would have lived that long. The obstetrician assured them they made the decision that saved his life.

UNWELCOME WAKE-UP CALL

ith nothing to do but wait, Kristi, Tim, and their 15-month old son, Paul, went home to get some sleep. Around 2:30 a.m., they were awakened by the buzzing of the emergency hospital pager. They were told Ethans heart rate had skyrocketed to 235 to 255 beats per minute, and they needed to make it to the hospital right away to say goodbye to their baby boy. I remember driving there thinking, Is my baby dead or is he alive? Kristi says. I was just so afraid we were going to walk in and he was going to be dead. When the Gilberts arrived, they saw a team of two doctors and 10 nurses surrounding Ethans incubator. The dedicated staff was hard at work, doing chest compressions every 30 seconds and cardioversion (shocking the heart) to keep him alive. I was trying to hold onto him, and his hand was holding my pinky, and I remember Tim standing next to his bed saying, Fight Ethan, fight. You can do this, just fight. Frustrations grew among the staff as Ethan became increasingly unresponsive to treatment. Nothing we did seemed to work, remembers neonatologist Dave

Green, M.D. I felt pretty helpless since we could not get a sustained response after trying many different therapies. Green is among a group of 1,250 doctors who make up the Pediatrix Medical Group, a national network of collaborating physicians. In his 20 years of treating premature and sick newborn babies, Green has seen fetal arrhythmias often. Roughly 1 percent to 2 percent of pregnancies result in some sort of arrhythmia. Of those babies, Green notes, the majority are not remotely as severe as Ethans case was. The severity of Ethans condition, mixed with the tense drama that accompanied his case, plays a part in why, nearly 10 years later, Green still vividly remembers working on Ethans case. There are many things I remember from that early morning, Green says. I remember his bed space in the neonatal intensive care unit, the time of day, a lot of the medications, the cardioversion, and calling his parents at home telling them we might lose him. I did not think Ethan was going to survive beyond that morning when he became so unstable. Although it didnt appear as if anything in his body was working, Ethan kept fighting. His other organs began failing from the lack of oxygen, and the team in the NICU was starting to lose hope except for Green. I think I said something to the effect of, Lets try cardioversion one last time, he recalls. Thankfully, [Ethan] finally pulled through. In the end, it came down to that last cardioversion that made Ethans heart finally slow to a more stable rhythm. Our entire team was overjoyed. After stabilizing Ethans heart, the medical team transferred him to Childrens Medical Center to a more sophisticated electrophysiology laboratory. We were very fortunate to stabilize him long enough to transfer him, Green says. It is no stretch to say he is very lucky to have survived. And, survive he did. On Dec. 1, 1999, twelve days after he was born, Kristi finally held her newborn son and saw his face without the breathing tubes. I just remember being so thrilled, she says. It was quite a production getting him into my arms because of the wires and IVs, but I just

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ALL IN THE FAMILY

aising a child with special needs can feel like a very lonely journey, and thats just the feeling the Arc of Greater Tarrant County wants to eliminate. The Arc is a family-friendly organization that supports and educates individuals with intellectual disabilities and their families to help improve their quality of life and expand their opportunities to actively participate in the community. The group offers two parent-support groupsone in English, the other in Spanish. Individual and Family Service Coordinator Philip Bell has been involved with the Arc for almost 30 years as a parent of a disabled daughter and now as a staff member. If there is one thing I can encourage, it is the importance of parents joining other groups to educate Philip Bell themselves on all of the resources available in the community to help their child and to network with other parents, Bell says. Along with offering classes and social nights for families with adult children, the Arc actively advocates the removal of the R word (retarded) from the English vocabulary. For more information, visit arcgtc.org.

MOTHER AND SON: Kristi and Ethan Gilbert.

BACK TO NORMAL LIFE

iagnosed with autism when he was 6 years old, Ethan has always made life eventful for his parents and his two brothers. Neither of Ethans siblings Paul, 15 months older, and Jackson, 3 years youngerhave any serious health difficulties. However, says Kristi, with two boys that get into everything and a child with medical problems, there was literally a period of three years where we were in the emergency room at least once a month. His health problems aside, the familys main concern is Ethans happiness. There are times when its difficult, but overall hes just a happy kid, says Kristi, who works for a local municipality. Even though he cant speak, he has the best laugh. Its so pure. [Hell] laugh so hard out of the blue at the silliest thing, you think hes going to cry. There are times when Im sitting on the couch and hell come up, in his 210 pound, 5-foot body, and sit right on my lap, she says. A hug from Ethan is special. But its not really a hug; [its] more [like he] just leans his head into you. Raising Ethan has been a life-changing experience for Kristi, who says it made her and Tima computer graphics operatormature more quickly. There were so many major things we had to deal with so young that really made us grow up, she says. Certainly we went through stressful situations, but overall we really feel like this family has been designed for Ethan. Everybody has a different bond with him, she says. I remember talking to Paul when he was 5 and he asked me if Ethan will ever be able to live on his own, and I said, Probably not, sweetie. And he asked if [Ethan] will ever be able to be a daddy and I said, Probably not. And he said, Mommy, thats just sad. When I get bigger and Im older and have a house of my own, Ethans going to come live with me and Im going to take care of him. Its the familys resilience that led them to create their own version of a normal life.

wanted to sit there for hours and hold him. At long last, Kristi and Tim finally brought Ethan home. While the homecoming was joyous, Kristi says, it was also scary, because nobody knew what had gone wrong. We didnt really have any answers, and we still dont, for a lot of his problems. Heres Ethan, who came as close to death as you could without actually dying, and now the doctors are saying, OK, its your turn; you take care of him now. The homecoming also came with more medical complications. Ethan would later be diagnosed with a sunken chest and hydrocephalus (commonly known as water on the brain), which would put him in brain surgery at only four months old. The surgery, performed at Childrens Medical Center, was to place a shunt in his brain to drain the excess fluid. That is still the main problem threatening Ethans life.

Its forced me to be creative, Kristi says with a laugh. Its a different normal. Hes still in diapers, so weve had to put vinyl floors in his room and cover his bed in boat canvas material because they would get so messed up. Its hard because at times I feel we cant be like a normal family. We cant just go to a restaurant or a party. Overall, however, the family has been able to modify its excursions. Instead of sitting in the bleachers at Jacksons and Pauls football games, the family cheers from the sidelines next to their minivan, where Ethan can watch his favorite Veggie Tales videos with the door open. And since Ethan can figure out just about any DVD, VHS, or cable box, Kristi had no problem laughing with the cable company representative when Ethan ordered hundreds of videos from On Demand, somehow bypassing the parental block and racking up a bill of $300, which the cable company graciously removed. I would love to just peek inside his head and know what hes thinking and what he understands, Kristi says. I think he understands a lot more than we give him credit for. Laughing through the hard times and loving everything in-between is how Kristi makes it through so eloquently. But there was always one aspect missing from her mamas boy relationship with Ethan, she says: What I wanted more than anything was to hear his voice. Because of Ethans autism, he hasnt been able to communicate vocally. He can sign a little and loves to blow kisses, but Kristi always wanted to hear him speak. Inspired by a documentary called Autism: The Musical, Kristi went to work teaching Ethan how to say mama. He was trying so hard, she remembers. He kept pursing his lips together with a look of concentration on his face. Then he said, mmm and I coaxed him a little more and he finally said mmm-ammm-a. If I never hear the word again I will still remember what it sounded like. Its something so many people take for granted. But after eight years of not hearing my child speak, he finally said that beautiful word.

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