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Home Life

Ethans

StruggleA Tarrant County amily

ights to give their boy a chance at lie.

Story byKRISTY ALPERT

Illustration byMATHEW VINCENT

Every year, one in every 150 children is diagnosedwith autism. One in every 500 newborns suersrom hydrocephalus. Three thousand babies are

born with brain damage. Roughly 3 percent o the popula-tion is diagnosed with Wol-Parkinson-White syndrome.

And a tiny percentage o babies are diagnosed with etalhydrops, a condition where uid accumulates in the etusand hal o those babies dont make it.

One Keller child has battled all o these disorders.

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Home Life

A NATURAL FIGHTER

This is the story of ethan gil-

bertyour average non-verbal,

autistic, brain-damaged, 10-year-old boy

who was diagnosed with sleep apnea, etal

hydrops, hydrocephalus, and Wol-Parkin-

son-White syndrome.

Ethan Gilbert has always had the uniqueskill o deying the oddseven beore 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 orm o arrhyth-

mia known as Wol-Parkinson-White syn-drome, which resulted in a dangerously

rapid heart rate. Moments later doctors

diagnosed him with etal hydrops, a condi-

tion that caused uid collections in his body

to aect his lung and heart unction.

Ethan desperately needed help.

With his cardiologist recommending

one solution and his obstetrician another,

Ethans parents, Kristi and Tim Gilbert o

Keller, were aced with one o the hard-

est decisions o their young lives. They

were concerned because he was going into

heart ailure, recalls Kristi, now 32. Thecardiologist 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 o sur-

vival i they delivered him early with the

emergency C-Section, and a 100 percent

chance o survival i he was carried to term

with the medicine. We look at it now andthink, What parent would choose a 50 per-cent chance o survival over a 100 percent

chance? remembers Kristi. But we just

knew we had to get him out.

Ten minutes ater the decision was made,

Kristi was wheeled into the Presby operat-

ing 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 beore he passed.But Ethan surprised everyone by hold-

ing on.

Five days later Kristi and Tim, now 31,

were released rom the hospital, leaving

Ethan in the hands o the doctors and

nurses there so the couple could go home

or 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 hospi-tal, 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 lie.

UNWELCOME WAKE-UP CALL

W ith nothing to do but wait,Kristi, Tim, and their 15-monthold son, Paul, went home to get some sleep.Around 2:30 a.m., they were awakened

by the buzzing o 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 araid we were going to walk in

and he was going to be dead.

When the Gilberts arrived, they saw a

team o two doctors and 10 nurses sur-

rounding Ethans incubator. The dedicatedsta was hard at work, doing chest com-

pressions every 30 seconds and cardiover-sion (shocking the heart) to keep him alive.

I was trying to hold onto him, and his

hand was holding my pinky, and I remem-

ber Tim standing next to his bed saying,

Fight Ethan, ight. You can do this, just

fght.

Frustrations grew among the sta as

Ethan became increasingly unresponsive

to treatment. Nothing we did seemed to

work, remembers neonatologist Dave

Green, M.D. I elt pretty helpless since

we could not get a sustained response atertrying many dierent therapies.

Green is among a group o 1,250 doctors

who make up the Pediatrix Medical Group,a national network o collaborating physi-

cians. In his 20 years o treating premature

and sick newborn babies, Green has seen

etal arrhythmias oten. Roughly 1 percent

to 2 percent o pregnancies result in some

sort o arrhythmia. O those babies, Green

notes, the majority are not remotely as

severe as Ethans case was.

The severity o Ethans condition, mixed

with the tense drama that accompaniedhis case, plays a part in why, nearly 10 yearslater, Green still vividly remembers working

on Ethans case.

There are many things I remember rom

that early morning, Green says. I remem-

ber his bed space in the neonatal intensive

care unit, the time o day, a lot o the medi-

cations, the cardioversion, and calling his

parents at home telling them we might lose

him. I did not think Ethan was going to sur-

vive beyond that morning when he became

so unstable.

Although it didnt appear as i anything inhis body was working, Ethan kept fghting.

His other organs began ailing rom the lack

o oxygen, and the team in the NICU was

starting to lose hope except or Green.

I think I said something to the eect o,

Lets try cardioversion one last time, he

recalls. Thankully, [Ethan] fnally pulled

through. In the end, it came down to that

last cardioversion that made Ethans heart

fnally slow to a more stable rhythm. Our

entire team was overjoyed.

Ater stabilizing Ethans heart, the med-

ical team transerred him to ChildrensMedical Center to a more sophisticated

electrophysiology laboratory. We were

very ortunate to stabilize him long enoughto transer 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 ater he was born, Kristi

fnally held her newborn son and saw his

ace without the breathing tubes. I just

remember being so thrilled, she says. It

was quite a production getting him into my

arms because o the wires and IVs, but I just

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BACK TO NORMAL LIFE

D iagnosed with autism when hewas 6 years old, Ethan has alwaysmade lie eventul or his parents and his

two brothers. Neither o Ethans siblings

Paul, 15 months older, and Jackson, 3 years

youngerhave any serious health dii-

culties. However, says Kristi, with two

boys that get into everything and a child

with medical problems, there was literallya period o three years where we were in

the emergency room at least once a month.

His health problems aside, the amilys

main concern is Ethans happiness. There

are times when its difcult, but overall hesjust a happy kid, says Kristi, who works or

a local municipality. Even though he cant

speak, he has the best laugh. Its so pure.

[Hell] laugh so hard out o 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-oot body, and sit right on my lap, shesays. A hug rom Ethan is special. But its

not really a hug; [its] more [like he] just

leans his head into you.

Raising Ethan has been a lie-changing

experience or Kristi, who says it made

her and Tima computer graphics opera-

tormature 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 stressul

situations, but overall we really eel like this

amily has been designed or Ethan.

Everybody has a dierent bond withhim, she says. I remember talking to Paul

when he was 5 and he asked me i Ethan

will ever be able to live on his own, and I

said, Probably not, sweetie. And he asked

i [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 o my own, Ethans

going to come live with me and Im going totake care o him.

Its the amilys resilience that led them

to create their own version o a normal lie.

Its orced me to be creative, Kristi says

with a laugh. Its a dierent normal. Hesstill in diapers, so weve had to put vinyl

oors in his room and cover his bed in boat

canvas material because they would get so

messed up. Its hard because at times I eel

we cant be like a normal amily. We cant

just go to a restaurant or a party.

Overall, however, the amily has been

able to modiy its excursions. Instead o

sitting in the bleachers at Jacksons and

Pauls ootball games, the amily cheers

rom the sidelines next to their minivan,

where Ethan can watch his avorite Veggie

Talesvideos with the door open. And sinceEthan can fgure out just about any DVD,

VHS, or cable box, Kristi had no problem

laughing with the cable company represen-tative when Ethan ordered hundreds o vid-

eos rom On Demand, somehow bypassing

the parental block and racking up a bill o

$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 under-

stands a lot more than we give him credit

or.Laughing through the hard times and

loving everything in-between is how Kristimakes it through so eloquently. But there

was always one aspect missing rom her

mamas boy relationship with Ethan, she

says: What I wanted more than anything

was to hear his voice.

Because o 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 calledAutism: The Musi-cal

, Kristi went to work teaching Ethan howto say mama.

He was trying so hard, she remem-

bers. He kept pursing his lips together

with a look o concentration on his ace.

Then he said, mmm and I coaxed him a

little more and he inally said mmm-a-

mmm-a. I I never hear the word again

I will still remember what it sounded

like. Its something so many people take

or granted. But ater eight years o not

hearing my child speak, he fnally said that

beautiul word.

wanted to sit there or hours and hold him.

At long last, Kristi and Tim inally

brought Ethan home. While the home-

coming 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, or a lot o 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 o him now.

The homecoming also came with more

medical complications. Ethan would later

be diagnosed with a sunken chest and

hydrocephalus (commonly known as wateron the brain), which would put him in brain

surgery at only our months old. The sur-

gery, perormed at Childrens Medical Cen-

ter, was to place a shunt in his brain to drain

the excess uid.

That is still the main problem threatening

Ethans lie.

ALL IN THE FAMILY

Raising a child with special needs

can eel like a very lonely journey,

and thats just the feeling the Arc of

Greater Tarrant County wants to eliminate.

The Arc is a amily-riendly organiza-

tion that supports and educates individu-als with intellectual disabilities and their

amilies to help improve their quality o lie

and expand their opportunities to actively

participate in the community. The group

ofers two parent-support groupsone in

English, the other in Spanish.

Individual and Family Service Coordina-

tor Philip Bell has been involved with the

Arc or almost 30 years as a parent o a

disabled daughter

and now as a sta

member. I there

is one thing I can

encourage, it is theimportance o par-

ents joining other

groups to educate

themselves on all o

the resources available in the community

to help their child and to network with other

parents, Bell says.

Along with oering classes and social

nights or amilies with adult children, the

Arc actively advocates the removal o

the R word (retarded) rom the English

vocabulary. For more inormation, visit

arcgtc.org.

Philip Bell

MOTHER AND SON:

Kristi and Ethan Gilbert.