'Miracle Baby' Born Without Most of His Brain Defying Odds | ABC News

we begin with a poignant story tonight

of love and sacrifice in the face of

overwhelming odds a young couple learns

their child will be born with the

debilitating medical condition and they

bring him into the world anyway

now these parents have a medical marvel

on their hands here's ABC's David Wright

for Brandon and Brittany Buell the first

serious curveball of Parenthood came the

day after their 17 week ultrasound

these are his legs his hands and feet

are in the air like this the scan where

the couple first found out they were

having a baby boy ultrasound tech was

acting strange she got really quiet and

when she got to his head and was

measuring it she didn't say a word then

the very next day the phone rang with

sobering news they told me he had spina

bifida Wow and how did you process that

I don't really know I didn't really

process it at the time I couldn't really

believe it turns out that initial

diagnosis was wrong but the scan showed

a severe brain abnormality their son's

head was not forming properly the brain

almost non-existent miraculously Jaxon

survived he's now just over a year old

the doctors didn't expect him to in fact

it was the sort of pregnancy where

doctors as gently as possible mentioned

the word termination abortion is much

too charged or

it wasn't until 23 weeks pregnant that

it was brought up hmm about the option

that we had the option to terminate in

the state of Florida until 24 weeks to

put it bluntly many American families

faced with that 17 week scan would not

have brought this baby into the world

how many fingers do I see Jackson's

parents gave him a chance where do they

come from I can't say but I bet they

have come a long long way but in a way

this is the essence of that debate isn't

it it can be if anybody wants or doesn't

get that way but but we never we don't

try to take it that way hi handsome they

did think about termination I would feel

terrible doing something like that but

if they were to tell me he was gonna

suffer or he would be in pain or my life

was in jeopardy then my thought process

might have been diff

right we're Christian and we believe in

what we believe in but we still are

going to do the best thing for our

family for Brittany and ultimately for

Jackson and this is Jackson today

severely disabled but thriving for us

even just bathing him is a task that

requires both parents beautiful ways yes

or with that no where do you put his

happiness he's had all the time another

baby he's teething and gassy so he's

cranky often and he is the sweetest baby

I know we're biased and it's fine but

everything but Jackson is not like most

other babies here's what his brain

should look like instead this is

Jackson's brain only a year later did

neurologists at Boston's Children's

Hospital come up with the proper

diagnosis micro hydrocephaly dr. Heather

Olsen saw Jackson in August how much of

the brain is there I'm so very little

will he ever be able to talk I would be

shocked if he could will he ever be able

to walk independently very unlikely

there's no prognosis doctors are

surprised he's made it this far do you

have any sense as to how long he can

survive with us

I don't know I don't have a crystal ball

it really depends on the medical

complications it said to go away he's

only made it this far with the help of

his parents Jackson gets nutrition

through a feeding tube burping him

involves removing the excess fluid

directly from his stomach

he sometimes suffers okay from mild

seizures even when he's really calmed

sometimes he'll just he'll go into a

slight seizure is he suffering I don't

think so he was irritable when I saw him

and there's nothing about this that

causes pain per se

pain and suffering are not necessarily

the same things in the end the doctors

themselves say that science alone can't

answer that question and what is his

quality of life again I met him once so

I don't have a full appreciation of that

but I would ask his parents can you

press the buttons how he's able to see

the lights on his toy turtle is baffling

because the cerebrum is so small as to

be practically non-existent can't do it

for you I remind you see the big red

button you put your hand like that and

yet his parents who spend so much time

with them are convinced their son is in

there yeah it's so cute when he gets so

proud of himself it is hey grins cute

crying it is cute responding to their

love and attention every day we spend

time with them every day we play with it

every day we say I love you 100 million

times maybe a little exaggeration but

probably over a hundred times every

single day no exaggeration can you sit

up like a big boy we call him by his

name we say mommy's here daddy's here we

love you so much we're so proud of you

you're so strong or so smart he hears

those every day from us and sure maybe

I'm biased but I believe that positive

reinforcement and talking to him and

loving him

young buddy I think he was responding to

that very well

not only that they feel he loves

they hear him saying so and videos such

as this one even if others may not hear

it these parents feel it but Brittany

and Brandon also hear from the naysayers

whenever they post jackson's photos and

videos online people write the most

terrible things and we can't fathom what

kind of people would one think something

like that about an innocent child

especially one with special needs and to

actually hit the send button he's a

lucky boy you guys seem like great

parents we try we are trying hard

Jackson is lucky because many parents

would not have given him that chance it

hasn't been easy a lot of his treatments

including that trip to Boston are not

covered by insurance they've had to

resort to a GoFundMe campaign which is

covering most of their bills for now

every decision that we have ever made

for him have been about his happiness

his comfort no matter what that meant

and no matter what the cost

I feel like Jackson's doing so well and

can't eats the medical world so much and

we realize that Jackson's life has a

purpose whether you are faith-based or

whether you just are scientific and want

to see more about medicine learn more

about the human brain and at the same

time we realized the reality of Jackson

that we're we're probably going to

outlive him here is a excellent chance

of it we're just trying to give him the

best life possible knowing that it might

be a short one you realize that so every

day is precious ordinary people

struggling with an extraordinary burden

and doing it with love I'm David Wright

for Nightline in Tavares Florida