BDx13
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turn on nightline (abc) right now
They're doing a special on prematurity at the hospital where my baby girl spent three months. I can't believe I'm sitting here watching this.
If I fail math, there goes my chance at a good job and a happy life full of hard work.
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BDx13
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The Fight to Save Premature Babies
http://abcnews.go.com/Nightline/Health/story?id=1613703
'Nightline' Follows One Family's Struggle to Cope With the Daily Ups and Downs of a Daughter Born Too Soon
Feb. 13, 2006 ? - In small plastic incubators, human life -- born unready -- struggles to thrive.
These premature babies may be tiny, but they are entirely recognizable -- with tiny hands and toes, tiny little yawns, tiny little eyes that open and
look around.
But for these babies, their hold on life is fragile, because they are still so unready.
They're alive only because science battled back against nature, which is the daily struggle of the doctors and nurses who work in the neonatal
intensive care unit at Morgan Stanley Children's Hospital of New York-Presbyterian in New York.
For 10 days last month, the "Nightline" team visited the hospital and documented families' experiences and the doctors' efforts to save their babies'
lives as they explored the ethical questions raised and the decisions made.
One of those tiny babies is Allison Lucca Susana, born weighing just under 2 pounds and now just a few weeks old.
Her story has been one of ups and downs, for both her and her parents.
The Struggle to Live
Allison's mother, Miriam, is 25-years-old and has diabetes and other health problems. Doctors had told Miriam and her husband, Pedro, that she might
not ever be able to become pregnant.
She beat the odds, although it hasn't been easy. First, at six months along, Miriam's body began fighting the pregnancy -- her blood pressure shot up
so high it threatened her and the baby.
So Allison was delivered in an emergency Caesarean section and was taken straight to the neonatal intensive care unit, which got oxygen moving into
her still underdeveloped lungs, food into her body and kept her warm, creating, in a sense, an artificial womb.
"When you're pregnant you read all the books, what to expect when you're expecting," Miriam said. "Nobody ever told me about premature babies and all
the things they go through. So much is going on, you have no idea."
And in the early days of Allison's stay here, Miriam had no idea that her daughter still had a life-or-death struggle in front of her. But then, who
ever thinks of newborns in life and death terms except for the nurses and doctors who deal with that every day.
All In a Day's Work
Dr. Richard Polin is one of those doctors. He's been taking care of these fragile babies since 1975, when intensive care for infants was still
relatively new. Parents were kept away except during strict visiting hours. And given that a normal pregnancy lasts 40 weeks, it was inconceivable
back then that they could routinely save babies born earlier than 30 weeks.
Now, there's Allison at 27 weeks. And others born even earlier.
"For now, I think the limits of prematurity, whether you call it 23 weeks or 24 ... have been reached," said Polin, who heads the unit.
The challenge now, Polin said, is safely "growing" the babies, who have been born with hearts, lungs and digestive and nervous systems that are months
away from being ready.
But if there is a lifesaving procedure or a new technology that can be applied to the infant, it will be found here at the Morgan Stanley Children's
Hospital.
The unit was designed to provide as much serenity as you can have in a neonatal ICU, and that's been another important change over the years. Families
are not only allowed in, they're encouraged to visit any time of the day or night.
Soothing music is provided for the babies, and soft lighting and private space for the parents. It's all meant to ease the sense of crisis.
The Exhaustion Never Ends
Still, it's not easy to see a baby start life this way. Miriam has to hold Allison hooked up to the lifesaving machines. In spite of this, Pedro and
Miriam try to make the best of it.
"You laugh one minute and you even make jokes and the next minute the reality is that our baby is in the hospital," Miriam said. "We can't hold her.
We can't kiss her. As bad as we wanted her, now we have to wait a little longer."
Added to that is the chronic sense of exhaustion, the parents both said.
"I don't think we stop being tired," Pedro said.
"There's not a level to describe how tired we are," Miriam agreed.
And maybe that's what finally hit Miriam on a late afternoon a few weeks ago. Or maybe it was the relief that Allison was alive and being taken care
of. But finally it was too much -- and she broke down in tears.
But what she and her husband didn't and couldn't know was that things were about to get much worse.
A Turn for the Worse
After a fairly easy start to life, Allison's family came to her incubator one morning and found her gray and not moving.
"She wouldn't open her eyes at all," Pedro said. "And her belly was really red."
A day later and her condition had grown much worse -- she had a raging infection. Two floors away a surgeon named Mark Arkovitz was preparing to
operate.
"She was getting pretty sick, which is why we decided to go to the operating room," Arkovitz said. "In this baby the intestine practically died, and
the stool and the feces was just laying there in the baby and was producing a profound infection and that was killing her."
Although she weighed less than 2 pounds, Allison still needed a breathing tube down her throat for the surgery, but because she was so tiny, that part
of the procedure alone took more than an hour to accomplish.
'Was It Something That I Did?'
Outside her daughter's operating room, Miriam admits how guilty she feels.
"You think . . . was it something that I did to make her be born early? And in reality there is nothing that you did. It was her time to come now,"
she said.
While her mother grappled with her daughter's precarious health, inside the operating room, doctors discovered that inside Allison's abdomen, which is
smaller than a peach, more than half of her intestines had died. They weren't getting enough blood flow because her tiny half-grown heart couldn't
push blood to them effectively. And she needs those intestines functioning to gain weight.
"If all of it had died I don't think she would have gotten off the table," Arkovitz said. And without the surgery, she probably would have died within
hours.
Arkovitz tried, delicately, to convey to the parents just how sick Allison was.
"He kept saying she's very sick. That was the one thing that he repeated over and over," Miriam said. "He was so serious that it scared us."
"He said she lost a lot of blood but she's alive. She's still sick," Pedro said.
'Don't Lose Hope'
But Allison's situation is indeed serious. The infection has passed, but what are her chances with half an intestine? The doctors don't know. And
that's the truth of neonatal intensive care: The doctors bring your baby back from the brink of death -- twice in Allison's case -- but they can't
predict with certainty how any baby will turn out.
"You think, 'OK, I have a premature baby, she'll be in an incubator until April -- my due date -- and I will take her home and she will be fine.' No,
they're tiny. Their immune systems are not developed yet," Miriam said. "It's a horrible feeling to feel helpless when you're used to taking control
of your situation. In reality they should have still been inside of you, hearing your voice, hearing your husband's voice, hearing your family's
voice. "Feeling your warmth and although they're inside of an incubator, it's not the womb," she said.
"They need to know that you're there. That you love them."
If I fail math, there goes my chance at a good job and a happy life full of hard work.
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RomanticViolence
* Jennytailya *
Posts: 1547
Registered: 3-26-2004
Location: Baltimore MD
Member Is Offline
Mood: Fuck U All
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When i was pregnant with my first child i went to see a friend who had a baby in the NICU. I saw babies in there that were so tiny and hooked up to
all these tubes it was sad and scarey i almost cried. There was a baby in there that was so small that the babies ear was about the size of my thumb
nail.
I am so glad i've never had to go through that... i don't think i could have handled that.
I hope that everything is going good with your baby girl duane.
Have you ever noticed how crayons are a lot like M&M's? All the colors tend to taste the same.
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CR83
Moderator
Posts: 5221
Registered: 1-23-2004
Location: STL!
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Duane, I'm sorry I missed it. Me and Mrs. Reed83 talk about your little girl almost weekly. That post you had a while back where you laid it all out
there about what happened is still my favorite thing I have ever read here. We are all very fortunate in our own ways but your little girl is such an
inspiration in the Reed83 household. We donate monthly to a Children's Hospital here in STL and think of your little one as we do. Thank you Man.
She's so awesome.
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Voodoobillyman
The Artist Formerly Known As...
Posts: 4247
Registered: 8-12-2005
Location: Eastern Seaboard of the United States
Member Is Offline
Mood: my daughters beautiful curiousity
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Thats one strong lil lady you have their Big D, my hats off to her and her parents for the strength displayed in the face of such adversity. I truly
do not know how I would have handled something like that. It's easier not to get worked up about little things when you have a happy healthy child to
be extremely gratefull for. Inspirational man, never forget that. Tell yer lil one she has alot of admirers out there somewhere
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upyerbum
Posting Freak
Posts: 3226
Registered: 10-14-2005
Location: Dartmouth, Nova Scotia
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Mood: Condemned 84
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I can't even imagine. I'm grateful everyday for my daughter.
Nothing else matters.
Well, its this place where nobody works, and the pigs don\'t give you any shit. Everyone smokes weed and gets drunk all day. Its a place where
cunts like me and you can truly take it easy and relax. Know what I mean?
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BDx13
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thanks to everyone for keeping my girl's ordeal in mind. last night's show got me really excited about participating in this year's March of Dimes
walk. unfortunately, it seems the vice president's shooting of an old man bumped part two of the nightline special. maybe it'll be on later this
week.
If I fail math, there goes my chance at a good job and a happy life full of hard work.
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jonnynewbreed
Posting Freak
Posts: 1091
Registered: 4-4-2003
Location: Dartmouth, nova scotia
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Mood: Quite nice actually.
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Were the mother and child they were speaking of yours Duane?
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BDx13
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no, no. same problem (extreme prematurity), same hospital, same doctors, same nurses though.
If I fail math, there goes my chance at a good job and a happy life full of hard work.
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Voodoobillyman
The Artist Formerly Known As...
Posts: 4247
Registered: 8-12-2005
Location: Eastern Seaboard of the United States
Member Is Offline
Mood: my daughters beautiful curiousity
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Have you ever looked into support groups for people going through this? your lil girl would be a real inspiration and living proof that it's not the
end and they do get better. I know if that were me I would want to here from someone who had experienced the same thing so they could tell me their
kid made it alright and it is possible to move on from it.
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BDx13
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i know there are groups for parents at some of the top hospitals in the area - columbia presbyterian in nyc and children's hospital of philadelphia -
but we never participated in any. it's tough, cause really, our kid is more or less fine (no long-term health issues, just a lot of therapy for
things that she needs some help catching up with), but the whole thing definitely fucked me up a bit. i wonder how long it will effect the way i look
at her.
If I fail math, there goes my chance at a good job and a happy life full of hard work.
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BDx13
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Part Two is about to come on.
Here's the accompanying article:
http://abcnews.go.com/Health/story?id=1623875
Babies in Intensive Care: Parents Try to Cope
While One Couple Takes Home Their Healthy Babies, Another Deals With Many Hurdles in the NICU
Feb. 15, 2006 ? - Leaving the hospital recently, Kristen and Larry Kahn seemed happy as they pushed a double-stroller that carried their new baby twin
sons, Zachary and Jason.
The Kahns may look like any other proud new parents, but what they've been through in the past year is more than most parents can imagine.
For 10 days in January and February, the "Nightline" team spent 24 hours a day inside the neonatal intensive care unit -- the NICU -- at Morgan
Stanley Children's Hospital of New York-Presbyterian in New York. "Nightline" documented the emotional trauma of families whose smallest members hover
between life and death in their first weeks of life, and the decisions doctors and nurses must make every day in an effort to save them.
The Kahns, who conceived through a fertility treatment, have been through the NICU experience twice. About a year ago, Kristen delivered her baby boy,
Jacob, prematurely. He died five days later.
"He was just barely a pound," said Larry.
A Way to Remember
To help parents cope with the death of a baby, the nursing staff fills a satin-lined "memory box" with mementos of the baby they've lost; the box
might include the child's hand- and footprints, birth certificate, clothes and photos.
"In high school, you would get the essay question all the time of, if your house was burning and you could rescue only one thing from your house ..."
Larry said. "I think this would probably be it for me."
Wendy Cambrea, a NICU nurse, knows the importance of these memory boxes.
"A lot of times the parents don't want them right away. We save them here for them, and a lot of times, a year or so later, they'll want them because
they have nothing, nothing else to remember the baby by," said Cambrea.
Cambrea speaks from experience -- she has been there herself.
"My first baby was premature, and he only lived for two days, and I have a memory of what he looked like. I wish now that I had had something, some
kind of picture, something that I could have remembered what he looked like," she said.
The Kahns credit the memory box with helping them hold on to the memory of their son, and to heal.
"It took us so long to have a baby. We just wanted to spend every second with him," Kristen said.
Zachary and Jason, now just over 3 weeks old, were born five weeks prematurely. Luckily, they are both healthy, although Zachary needed to briefly
revisit the NICU because he had difficulty breathing. Fortunately, he pulled through and was discharged with a clean bill of health.
Maia's Story
While Larry and Kristin have known both extremes -- losing a baby and taking two healthy babies home -- another couple, the Goldmans, cope with a
different problem: the long-term health status of their prematurely born daughter, Maia.
Maia was delivered Jan. 12 at just over 30 weeks -- which is 10 weeks short of the critical gestation period needed for the maturation of vital
organs. And while she looks healthy, she was born with only one working kidney, and that one doesn't work very well.
Dialysis and an eventual kidney transplant loom in her future, if she can grow to the requisite size needed to receive a new kidney.
And so another set of parents, Matt and Masumi Goldman, face the possibility that their first and only child might not make it.
"Apparently, this isn't a genetic thing, just really bad luck. Why's this happening and why can't I do something to fix it?" Masumi said.
Close by, Matt's mother, Liz Goldman, a retired pediatrician, said she was doing whatever she could to help Maia get well -- even if it meant talking
to the damaged organ to tell it what to do.
"I chat with her kidneys every day," Liz said. "I just want to be grandma. I don't want to know numbers. If the nurse says go buy preemie clothes at
the Gap, well OK, you know, it's hope, hope."
But Dr. Jack Lorenz, a neonatalogist, has become concerned about Maia as the extent of the problem becomes clearer.
"This baby hasn't got renal failure that will cause death in the near future, but it will make it very difficult for her to grow and develop," Lorenz
said. "And I think we can offer the family long-term survival [it's going to be with risk], and prospects for success are certainly not even 50-50."
The Goldmans have remained hopeful, though. "I think she's doing really well, and we just need to give the kidneys time," Masumi said.
At a staff meeting, Lorenz discusses Maia's situation.
"It's time to stop saying the kidneys are going to get better," he said.
The time has come for a heart-to-heart talk between the medical team and the family.
And the following day, a large group assembles -- the medical team, the parents, the grandparents -- and the door stays closed for a long time.
Check back tomorrow night to see the conclusion of the Goldmans' story.
Copyright ? 2006 ABC News Internet Ventures
If I fail math, there goes my chance at a good job and a happy life full of hard work.
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BDx13
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damn, i thought this series was over, but another segment is about to come on.
tears me up, but i'm glad it's on. these little kids need all the support they can get.
If I fail math, there goes my chance at a good job and a happy life full of hard work.
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DaveMoral
Posting Freak
Posts: 4334
Registered: 1-24-2006
Location: Ardmore PA
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It always breaks my heart to see this stuff. Thank God mine has gone full term... I'd be a fuckin' mess. Duane, I don't even really know what to say
you know? I'm glad we live in a world were prematurity isn't an automatic death sentence anymore.
Goddamn, I haven't really taken too much time to think about all the possible complications there could be with my son's birth... really scary when I
think about it. Last week I had a dream that he died in childbirth... my wife said I was shouting in my sleep...
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BDx13
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dave, how old is you boy? or is he still en route?
going through all this has made us pretty gun shy of round two. still mentally preparing ourselves for that. if you're interested, you can check out
my original post about the whole deal here: http://thorprecords.com/boards/viewthread.php?tid=1274
If I fail math, there goes my chance at a good job and a happy life full of hard work.
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CR83
Moderator
Posts: 5221
Registered: 1-23-2004
Location: STL!
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BD, you are great. Just another reason this board is so awesome. Everyone comes clean about everything. I love it hear.
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DaveMoral
Posting Freak
Posts: 4334
Registered: 1-24-2006
Location: Ardmore PA
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D, he's just a few weeks away.
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BDx13
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haha, thanks chris!
and congratulations, dave. prepare yourself for a life changing experience!
If I fail math, there goes my chance at a good job and a happy life full of hard work.
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DaveMoral
Posting Freak
Posts: 4334
Registered: 1-24-2006
Location: Ardmore PA
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Yeah, my motto has been that I'm excited and terrified at the same time Duane. Lookin' forward to it.
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