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-Headline in the New Yorker, February 11, 2014

*Some names have been changed.

“Your experience with corporate shaming was not unique”: Karen Vaughan’s Story

In 1993 I became pregnant with twins. We knew it was a high risk pregnancy, but until 25 weeks we thought everything was progressing normally. During a routine pre-natal exam I mentioned in passing something to my doctor who immediately became alarmed and put me in the hospital on total bedrest for the remainder of my pregnancy, which ended up being about two weeks. 

I was one of the lucky ones, my girls got vitamin K shots and steroids to promote lung development. But at 27 weeks I had an emergency C-section and delivered two girls - 1lb14 oz and 2lbs 1 oz. My husband and I spent the next three months going back and forth between the hospital and home, watching our girls go through so many of the same things your daughter went through. 

We finally brought the girls home after three months in the NICU only to lose one after 30 wonderful days at home with them to SIDS. One of the things they didn't tell us when they sent us home was the exponentially higher risk to preemies and twins to this heartbreaking "syndrome.

My husband was working for a local manufacturing company at the time and during the annual meeting with the insurance rep who would review the changes to the policy and rates for the upcoming year, the rep stated, "Rates are going up because last year someone had the nerve to have twins that cost the company a lot of money." To this day, that statement still brings me to tears. 

“I felt such shame”: K’s Story

I was 21 weeks pregnant with twin girls when I felt pain. I went in for a ultrasound and knew right then that things were going terribly wrong for my girls, particularly for Baby B. Her head was tilted back in a strange way and I just knew. 

I was in labor and put on bedrest, and my precious girls weren't growing properly. What had I done to cause this. 

We perhaps foolishly disclosed our situation to [my husband’s employer]. They were initially supportive and offered advice to get a second opinion.  Over the next few weeks, my husband continued to work on projects and received no negative feedback on his performance. 

After visiting every perinatal specialist in the area, it was confirmed that Baby B would likely die. While her heart was still beating at that time, she would not be viable and might be born alive but would likely be on a do-not-resuscitate order or perhaps survive for a few days.  She was starting to necrotize.  Baby A was also in distress but would likely hang in there despite being low birth weight, with the possibility of suffering deficits long term.  

That day, my husband received a call from [his employer]. We told him our news in detail. He said he was sorry to hear but actually he was calling to let my husband know that the job was no longer available - he fired him in that same call.  I heard it with my own ears. 

“I got ‘laid off’ because I was ‘distracted’ after my daughter’s birth”: Maurice Reeves’s Story

MauriceReeves

It's been almost thirteen years but the memories are always fresh.  They're right under the surface and a sound or a smell can bring them rushing back.  There I am sitting in the cramped operating room rubbing my wife's cheek as the doctors are trying to save our daughter's life.  I'm watching them cut her open and reach into her, pulling out this tiny fragile pink infant two months early, and then the room is absolutely still, everyone waiting to see if she'll cry.  

I remember the long endless days sitting in the NICU, wanting to squeeze her but afraid to touch her sensitive skin and hurt her.  I remember the smell of the soap as we stood in the scrub room washing our hands and arms up to the elbows in scalding hot water so we could sit with our daughter.  I remember sitting there listening to each rhythmic beep of the heart monitor, and saying a silent prayer between each one: "and another, come on sweetie.”  

I remember standing in my boss's office as I got "laid off" because I was "distracted" after her birth.  They needed "focus and commitment.”  

I remember walking with my wife down the long hospital hallways when she was finally discharged, but our little girl was still in the NICU and we had to leave her behind.  We tried so hard to keep on a brave face as we went to the car, but once it was just us sitting in the parking garage alone we bawled for thirty minutes.  

“I will shortly be homeless”: Carolyn B’s Story

Unfortunately I think there are more companies than we think who either cut benefits or get rid of employees who "cost too much" with their insurance. I am an example of that. 

I lost my job Dec 20, 2012 (Merry Christmas) over being "too expensive" for my health insurance. I had 2 cancers in one year, have a PhD and taught and had to work full time though surgeries, chemo. They kept trying to push me to quit, finally accused me of taking the job just so I'd have insurance. 

I will shortly be homeless because my unemployment compensation has run out. Extended unemployment benefits were cut off in DC (although the state max after fed taxes was $196/week which does not get you very far and delays the train wreck), savings are gone, and to make matters worse I live in a state that did not expand Medicaid. I guess the plan is to let all the poor people die and solve the "poor" problem that way. Our governor is "proud" he didn't expand Medicaid. 

I am contemplating [going public with my story] although if I do that it may trash my job search since then it will be out there that one of my cancers has no cure (long life span though - follicular non-hodgkin’s lymphoma - the other two cancers were breast on either side 10 years apart). Actually if it gets out there that I even had cancer to begin with, that info alone might sink my job search.

For a supposedly civilized country we certainly appear be becoming more and more self centered as a society. Neither your family nor mine had any idea we were about ready to have the unthinkable happen. Stuff just happens sometimes. We buy insurance for that purpose. Sometimes we need to use it.

“I was the ‘burden’ on the policy”: Carolyn’s Story

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My husband and I delivered two premature babies (25 weeks and 6 days, 700 and 800 grams each). They were Baby A and Baby B for a while, as we were unsure of their permanence in this world. They were delivered in Japan and were in the hospital a long time.  We are American, so we were on my husband's healthcare, not the national Japanese health care system.  Reading about your beautiful daughter brought back so many memories both good (feisty) and horror: Do I really have to file the Japanese birth certificate within one week of birth if they are not going to live?  Seems like cruel punishment.

But what it made me remember most what I WAS grateful for was the incredible way the Japanese never asked about insurance and just gave our daughters the best care possible.

When it was all said and done, they were a lot more than 1 million dollar babies, and the costs far exceeded the policy limits. The head of my husband’s division just made sure it was paid. No questions asked. No benefits changed.  That is how it should have been in your case, as opposed to the tragically insensitive actions and words of Mr. Armstrong, or similarly, those of one of my former employers.  

I was very close with my employer, they were like family.  I loved my job and I felt they very much supported and respected me.  However, when I was 28 with a highly unusual case of uterine cancer, I was insensitively told that we had to switch insurance carriers due to my "burden" on the policy.  It was stated with little understanding of the tremendous angst, embarrassment and shame that was placed on me for being the “burden”. 

“The same day I was put on bed rest, I was told my job couldn’t be extended”: Leslie M’s Story

Leslie M

I can’t say for sure that I was purposefully targeted.  My story is tangled with fear and emotion and an imperfect employment situation that had warning signs before I was pregnant.  My employer was a public agency: The City of Seattle…so it seems likely that incompetence was more to blame than greed.  But I found that a culture of incompetence and self-protective cover-ups can be just as damaging as corporate greed.  

I was in a benefited but temporary position.  Promises were made that the position would become permanent, or at least extended, starting before I was hired.  After all, I was launching a new program for Seattle City Light that would a) need someone to manage it and b) fund itself.

In November of 2010, I told my manager that I was pregnant with my second child.  My first child, born in 2008 had been born at 33 weeks due to severe pre-eclampsia.  This time, though I was considered to have a high-risk pregnancy, the odds were still favorable that I could have the redemptive natural birth of a full term baby that I had dreamed.  In March at 26 weeks pregnant, the dream ended.  I was put on bed rest to hold off the escalation of pre-eclampsia and intrauterine growth restriction (IUGR) for as long as possible.  The same day, my employer told me my position could not be extended and would end in August. 

I continued to work from home for a couple of weeks on bed rest. Conditions became more serious and I was admitted to the hospital.  I called and emailed HR to ask how to handle everything.  I was told that I qualified for the City’s Sick Leave Donation Program, whereby other qualifying employees of my department could donate sick leave to me.   I was told to fill out a form. Then an HR employee sent an email to approximately 1900 Seattle City Light Employees that stated:  Sick Leave donations are now being accepted for Leslie M. 

“We’re on the losing end of a medical lottery”: Richard’s Story

Our daughter, Sara, was born 7 weeks premature in December, 1989.  She was delivered by emergency C section at NYU Medical Center at approximately 2 lbs.  Her weight dropped to about 1.6 lbs. on the first day of her life.  My wife and I were told on numerous occasions by a team of very competent NICU doctors and nurses that our daughter was "very sick" and had only a slim chance of surviving for a few days.  Her primary problem was significantly underdeveloped lungs and associated infection.  

My wife and I were both heartbroken, yet resolute in our intent to see her through this trauma.  Sara was a very strong personality from the beginning.  We could see her fight for every breath.  And, fight she did.  After three months in NYU's NICU, we finally brought her home only to be forced to return her to the NICU a few days later with symptoms of pneumonia.  She finally left the hospital for good a couple of weeks later.

At the time, I worked for a major management consultancy out of the New York office.  We had what was regarded as pretty much standard health insurance for the time, an "old fashioned" 80/20 plan that most everyone had.  But, when you add up the costs associated with months in the NICU, they become overwhelming.  Our insurance paid for the standard 80%.  We were responsible for the 20% plus any costs above "ordinary and customary" charges.  When the bills are in the hundreds of thousands of dollars, the 20% and the "overages" beyond ordinary and customary charges are exorbitant.  We filed for personal bankruptcy within months.

“You can’t measure what my son has given back”: Laura’s Story

LauraColon

In the spring of 2008, I found out I was pregnant with my third child. Everything was boringly normal until the night of Nov. 19, 2008, when I was 34 weeks and 6 days pregnant. That evening, I experienced PPROM (pre-term, premature rupture of the membranes). My labor was induced and six pound, 8 ounce PuddinPie was born early in the next morning, Nov. 20, at 35 weeks. He was a large baby but had trouble breathing. Before breakfast, the NICU team from our local Level III hospital arrived, intubated him, gave him surfactant and transferred him to their hospital. Ten hours after having my baby, I walked out of the hospital with empty arms.

For the next nine days, I was thrust into an unfamiliar world, one where I could only watch my baby breath on a machine and eat via a tube down his nose. Although he was large for his gestational age, the neonatologists reminded us that he was still sick and “immature.” He was baptized at two days old and allowed to go home at nine days. We struggled even at home: he had a hard time gaining weight, so we were often at the doctor for weight checks. My husband worked long hours and I had two other children stuck inside since we couldn’t go anywhere due to RSV season.

I was wholly unequipped to be a parent to a preemie and, later, a special needs child. Everything we thought we knew about parenting had to be modified for this child who looked full-term and healthy but wasn’t. At the time, PuddinPie was the only preemie in our family and while they tried to understand my fears for his future, they were often dismissed because he was “only a little premature” and stayed “only a few days.” It wasn’t until he was two that we had, in writing, confirmation that there are long-lasting problems due to his early birth:  a severe motor planning disorder. He began intensive speech therapy with a skilled SLP. Shortly before he was three, he started preschool with our local Early Childhood Special Education team.

“The greatest gift you wouldn’t give your worst enemy”: Banks Staples Pecht’s Story

I am a lawyer, my husband is a pediatrician, and our daughter was two years old when I suddenly went into labor at 25 weeks.  Before my sons’ birth, my husband and I would have occasional conversations about the cost/benefit analysis of "resource allocation" to NICU babies when there are so many “normal" children who are without heath care at all.  We were not assholes, but rather trying to investigate the medical and societal ethics of these tough questions.  

Four months in the NICU, four years of intensive occupational, physical, and speech therapy, and three more years of worry later, our little guys are healthy, curious, vivacious first graders, who love to read, play Legos, ride their skateboards, and bug their big sister. 

The birth of my children took all of my greatest fears and hopes, and distilled them into a crystalline terror that I hope never to experience again.  And it made me fearless.

I call it the greatest gift you wouldn't give your worst enemy.

One of the hardest parts, I thought, was the lack of societal context for the experience.  There is no hallmark card for this one.  It's not congratulations and it's not sympathy.  It is a birth, but it is also a death: the death of one's hopes for a full-term pregnancy and the fuzzy filtered baby pictures in the mothering magazines.  It is the "why me" baying at the moon after we eschewed wine and sushi and did our part to control what is intrinsically out of our control.  It is the terror of facing a life so different from the one for which we had dreamed and planned - and the strange prospect that maybe that is a really good thing. 

“Cost and value are not the same”: George Estreich’s Story

laura mags 2

Old Songs, New Tests, and Expensive Children

Originally published 2/20/14 in Biopolitical Times. Reprinted with permission from the author.

On Thursday, February 6th, Tim Armstrong, the CEO of AOL, justified a restructuring of the company’s 401(K) matching plan by citing the sick children of employees. Two sick children, to be exact. At an internal town hall meeting, Armstrong claimed, "We had two AOL-ers that had distressed babies . . . that we paid a million dollars each to make sure those babies were OK in general.” Unsurprisingly, the backlash was substantial. Tone-Deaf CEO is a tune we all know, and Armstrong’s improvisation on the theme, like others in the genre, was both memorable and inelegant. The complex discordance of Caring (“OK in general”), Slashing (the benefit cut), and personal wealth (Armstrong’s salary last year: twelve million dollars)—not to mention the blaming-the-infants thing—was answered by a disapproving choir, tweeting and talking and commenting, more or less in unison. Armstrong has since apologized and restored the matching plan to its previous form. 

Rising above the other voices was a personal essay published in Slate, and written by Deanna Fei, the mother of one of the babies in question. Fei’s daughter was born months premature, weighing less than two pounds, and her narrative exposes the euphemism “distressed” for what it is: 

“My son’s life matters”: Carin Martin’s Story

Carin Martin

Our journey began when I was 27 ½ weeks pregnant and went to the hospital with complications.  The doctor gave me steroid shots to “quick develop” the baby’s lungs and I was sent home after a few days on best rest, medicines and with monitoring.  Two nights later I had severe abdominal pain and we went back to the hospital.   After several doctors and tests, the high-risk obstetrician came into my room and told me, “We know what’s wrong and we know what to do and we have to do an emergency c-section now”.  I had a condition called HELLP syndrome (which is a life-threatening complication considered a variant of pre-eclampsia) and the only treatment was to deliver the baby.

Rex Bauer Martin was born at 28 weeks and was 1 lb. 7 ounces.  As soon as he came out Rex peed and the doctor gave my husband John a “thumbs up”.  They rushed Rex up to the NICU and I could not see him for 2 days.  John brought me a picture and gave me one of his tiny preemie diapers which I kept with me until he came home (and still have).  

On day 3 Rex was transferred to CHOC at Orange for a PDA ligation where they performed a heart operation to close the duct that connects the aorta and the pulmonary artery.  Up to that point, the medicines they had been giving him had not stabilized his blood pressure and oxygenation levels, and we were told that that this was his best chance of survival.

“My bosses wonder why I’m so ‘lazy’”: Sara Batchelder’s Story

Sara Batchelder

I have chronic daily migraine, been refused disability insurance, and continue to dredge on in my job - with all my coworkers and bosses wondering why I'm so damn "lazy".  You and your daughter deserve every cent of your health care benefits.  No one understands until they have stood in your shoes.  If Tim Armstrong became disabled or had a sick child, he could probably retire early and live like a king.  And I’m sure he'd use his disability and health insurance to the maximum that he could (and his lawyers could get for him).

I just went to Washington DC to lobby Congress (with no success) for increases in NIH funding for migraine/headache disease and increased support for our veterans, who are increasingly being diagnosed with traumatic headache disorder.  

Sometimes I wonder why I am fighting when nothing seems to change, but I can’t think of what else to do! 

-Sara Batchelder

https://arashctab.wordpress.com

“You are not alone”: Denise Sangster’s Story

You are not alone.  

A friend lost his job after receiving outstanding reviews because the company wanted to keep health premiums at the same level at renewal time.  The only problem: he'd had a kidney transplant and needed thousand of dollars in treatment post transplant.  

While I understand the CEO has apologized, please do not let this story drop.  While Armstrong may have 'slipped' up with this story, there are many others that do not have the media access or voice to keep this from happening again.

-Denise Sangster, CA

“It gets better”: Sean’s Story

Sean H

The cost of our baby (we too had the dreaded folder with the bills) came in just shy of $1 million. Our little fighter is now 12 and doing awesome.  It's a tough road it gets easier.. Hang in there.  :-)

The subject says it all. I had always taken a sort of pity on people who had a birthday right before Christmas. Then life does what it does best and gives us our oldest daughter on December, 21st. But, since life really likes to throw 100MPH curve balls at times the twist here was that she wasnt supposed to be born until March 20th.

The day is etched so clearly in our minds and always feels like slow motion when we talk about it. It started like any other day with getting ready for work, getting our son his fruit loops, watching some TV, and then she says it. This wasn't something she hadn't said a thousand times before but it was the way in which she said it. I heard Traci call my name from the bathroom but it was in one of those "all time just froze and something horrible is happening tones". Long story short: Six months pregnant and blood. Lots of blood.

Fast forward to the hospital where they get her sorta stabilized and start to work on "what the hell is going wrong here?!" After a two hour ultrasound the doctors turn to face us and pretty much drop this bomb:

"The placenta is abrupting. This means it is separating from the uterus and that is causing the blood loss. The baby is stable at the moment but one ofyour choices is for you to have an emergency c-section and deliver prematurely with a 90% chance of survival."

If my life was a movie this is where the frame freezes and my head just explodes. It was like a scene right out of a prime time TV show. Sitting there we talked to ourselves about what we should do (to say we were terrified is an understatement) and finally asked what would happen if she just stayed in the hospital under observation etc... I'll never, ever, forget the look in the doctors face when he said the following:

"If the placenta fully abrupts she will be prepped for surgery and the duty surgeon called. But, the placenta is the lifeline for the baby. Once it is off, (here he paused, looked right at me and said) Let me ask you this:

How long can you hold your breath? How long do you think the baby can?"

We made our decision right there. C-section in 25 minutes.

Now, to prove life isn't just happy with 100MPH curve balls her sister was already scheduled to have a c-section on the same day in Orange County, CA.So, needless to say calling the family to inform them we couldn't make it on account of Traci having one too... went over well. 

Fast forward some more and our daughter is born coming in at a whopping 2pounds 7 ounces. Within 2 minutes she was on a ventilator and being prepped to travel to a different hospital where a level 4 Neonatal Intensive Care unit was going to put her on 24 hour watch (dedicated incubator side nurse).

For the first 70 days of her life that was her home.

So much happened in that 70 days from having blood taken from me to use for her transfusions to approving procedures that, if they went bad, could end her life... it's just mind boggling and surreal. To think that for the first week of her life we were not even allowed to hold her. The most we could do was touch her fingers and forearm. It's near impossible to describe.

Today, she is a fully energized insane mini-barbie. If you look closely at her heels and hands you can see dozens of itty bitty scars from all the tubes, pricks, bloodwork, and you name it.

Oh, why did the placenta go south? They never figured it out. My wife was the picture of health: vitamins, food, no smoking, no drinking, all straight and narrow. The doctors kinda left it at: One of those things.

Curve balls suck. Hitting them out of the park doesn't.

Hug someone you care about. :-)

“You can have insurance that’s ‘too good’: Julie Skinner Sutton’s Story

Thank you for your article about the "distressed babies."  Our daughter is now 10 weeks and one day old; her corrected gestational age is 36 weeks and one day.  

My husband and I joke that we are lucky he works for Verizon and not a smaller tech company.  We are still on a vent and looking at going home with a Tracy tube for 12-36 months.  

Your comment about pumping is dead on, I thought I was the only one who ever felt that way. Thank you.  I don't feel so alone suddenly.

Congrats on those 2 steps, no matter how small.

June 2015 Update:

I’ve still got some resentment from how things went with Marlowe all due to our insurance.

You see, you can have insurance that’s “too good”.  When that happens your local little hospital tries to keep you there because, frankly, they can bill.  If it becomes apparent that you REALLY need to go somewhere else they may still try to “keep it in the family.”  

Marlowe did great, for a while.  She was “ventillating beautifully” (yes, that’s a quote!) but every time we tried to get off the vent she wouldn’t make it. We we started asking if we needed specialists we were assured that “Baylor has the best.”  Essentially, the Lead Neo was going to send us to Downtown Dallas and our daughter would get a trach and go home.  But when I started asking deeper questions she got, well, nasty.  The thing is that Baylor DOESN’T have pediatric specialists and sub-specialists.  

“How can you place a price tag on that?”: Audrey’s Story

As the mother of a "distressed baby" and I cannot begin to tell you how distressed I became upon hearing Mr. Armstrong's comments. His comments were cold and heartless. They truly sickened me. I think only the parent of a preemie can fully understand the impact of his statements. I have always stated that you can leave the NICU but the NICU never leaves you! 

Our daughter Alexa was born 20 years ago, at 29 weeks and weighed 2 pounds 2 ounces. Due to inflation she was "only" a half million dollar baby. Our only concern was getting Alexa through the roller coaster ride of the NICU. 

Not once did we consider the financial aspect of her NICU stay. There were enough stresses on us during that time period. Wanting to be in the NICU everyday, maintain a work schedule and taking care of another child at home were stresses enough. Knowing that our employers and insurance company were standing behind us made it easier to concentrate on what was important-the health and well being of both of our children.  The only resources being drained were emotional and physical. My husband's employer offered the option of a catastrophic insurance rider and luckily we had the foresight to enroll in it.  

Not only is she our miracle baby, she is our pride and joy! She is currently attending NYU and continues to excel in all she sets out to accomplish. I still remember walking into the NICU and the nurse telling me Alexa had graduated..it was from the incubator into the bassinet.  I can only hope that feeling will duplicate itself when Alexa graduates college in two years! How can you place a price tag on that?

“I still get flashbacks”: Karl’s Story

My wife and I also have a preemie. She was born at 25 weeks, 1 lb 15 oz. My wife had no risk factors and they couldn't figure out why it happened. We also had our share of transfusion, respiratory distress, cardiac arrests, PDA ligations. She had a rough go of it in the NICU, a heart surgery that didnt go well followed by cardiac arrest. 

Then, around her second birthday, she got terrible pneumonia that her little lungs had a hard time with. She spent another month in the ICU.

Unfortunately people can be pretty cruel. When she was still in the NICU an acquaintance tried to market our daughter as an example of why abortion should be illegal. Aside from the fact that this person knew our political leanings are pro-choice, it was very disheartening to have our little girl clinging to life and being pulled into someones political discussions. 

I try to take those things out and replace them with how grateful and blessed I feel to have my little girl. She'll be three in April and everyday I think about being able to hug her and see her laughing. My experience was not on the public scale yours was but I thought Id share it anyway for what its worth. I still get the flashbacks,  and things like panic attacks when we have to go in for routine check ups. 

But three years in, its starting to get a little better. You make new memories to that help move the other ones a little further back. 

“A catastrophic birth”: Annika’s Story

Annika

I, too, experienced a "catastrophic" birth,with no prior warning, and my son spent 1 month in the NICU. He wasn’t premature, but suffered brain damage at birth and was given a very low likelihood of survival, and high odds of being basically a vegetable. Today he is a thriving, vivacious 3-year-old, and his only remaining issue is moderate hearing loss- which, given the outlook, is no big deal.

Our final hospital bills came to around $600k and my company-sponsored health insurance paid for it. I remember being very embarrassed when our health care premiums went up the next year and high usage was cited as a reason.

May 2015 Update: Caden is now a thriving, vivacious 4 1/2 year old.

-Annika, New York

“I had a perfect pregnancy”: Elizabeth Tsironis’s Story

Tsironis

I had a perfect pregnancy.  I was carrying healthy twin boys and everything was going well.  At 23 weeks, my water broke unexpectedly and I was rushed to the hospital.  Luckily, I delivered the twins at Children’s Minneapolis and they were capable of handling 23 weekers.  

During our 4 month stay in the NICU, my boys both had PDA ligations, perforated ileostomies, broviac catheters, oscillating vents, enlarged ventricles, developed NEC, had bacterial infections, and Retinopatha of Prematurity.  They each had 2 major surgeries before they turned 2 weeks old and weighed only 15 ½ ounces.  They had the roughest stay in the NICU I can imagine for babies.  I didn’t get to hold them until they were almost 6 weeks old.  The down times in the NICU were heart wrenching.  Not knowing for so long if we were even going to be taking our babies home was the hardest…and keeping it all in check as we also had our 18 month old daughter at home.

The first year home was extremely difficult.  We didn’t have people come in to the house and we didn’t go out.  It was winter and we couldn’t risk their tiny bodies getting sick.  We were diligent about washing and disinfecting everything for the first year until they could get strong enough to handle even a common cold.  Days and weeks passed…I don’t really know how we got through those difficult first years, but here we are…still married and the boys are now 12 ½ years old!  They are strong, healthy, active, beautiful boys.  We know how blessed beyond words we are.  We look at them every day knowing that they could just as easily have not been here at all.  

“I could never take any moment of my son’s life for granted”: Mara Schoner’s Story

Mara Schoner

I too have a kid who had slim chances of living and spent many weeks in the hospital. He also had a brain hemorrhage but he ended up developing hydrocephalus from the the blood and then requiring surgery.

I was also that mother who could never take any moment of my son's life or any developmental step he accomplished - couldn't take any of it for granted. 

I also wanted to say to you (because I know where you are) that my son is now almost 18 and a creative writer, applying to 5 universities. He's an unusual, beautiful, sensitive, caring person who is greatly appreciated at his high school by his teachers and other students. You'd never know how far he's come meeting him now.

So while you'll surely be wondering how your daughter will fare, celebrating every milestone and worrying...don't let anyone tell you how far she will or won't go. The sky's the limit - Dante was "feisty" too - that life force is something to contend with.

One other thing is something I just recently found: therapy that specifically deals with PTSD (I did EMDR) - it took me 17 years to brave it. And it's made a huge difference in my life. (And my family's lives!)

-Mara Schoner, mother of Dante

“My parents were told to make funeral arrangements for me”: David’s Story

I am holding back the tears. I was a premature baby born in 1967 with hyaline membrane disease. My parents were told to make funeral arrangements for me. Luckily, a doctor at the hospital had some ideas for my treatment motivated by the death of a premature baby born to JFK  earlier that decade. The treatment worked and I lived to get a Ph.D in physics!

-David

“A fighter”: Joan Pleasant’s Story

Joan Pleasant

My oldest daughter was also born premature on October 9, 1993. The doctors told us she would most likely be behind all her life & might have lifelong disabilities. But they said she was strong & a fighter. She would lift her head off the incubator table to try & pull the feeding tube out of her nose.

She only spent 5 weeks in NICU, but that was the longest 5 weeks of my life. I am happy to share that she is now a very happy & healthy 20 year old who graduated high school with honors & was always in the top of her class!

-Joan Pleasant

“A random massive stroke”: Kidron Flynn’s Story

I have been blessed with 2 children as well. My first spent nearly 2 weeks in the NICU after suffering from a random massive stroke hours after birth after a normal, healthy pregnancy. I was hospitalized for a month before my daughter arrived because I had a small placental abruption. I tell you this not because I feel I can in any way understand your grief and experience yet I can relate to the fact that there are emotional and financial tolls that shadow you long after its genesis.

When you spoke so eloquently and emotionally I wanted to hug your family and your children in support. I want you to know that your family and your experience will continue to live with me in a collective of perseverance and strength we all share in parenthood. May your family continue to grow and heal.

-Kidron Flynn

“I’m lucky to live in Canada”: L’s Story

Louis

As a business owner, man and father of 2 preemies, I'm speechless on how much that must've hurt to hear Armstrong’s comments and at the same time how mind-numbingly stupid he must've felt to say these words. As a CEO, he's supposed to look out for his company and people.

Both my sons were born preemies (25 and 27 weeks) and that challenge is so tough that I can't think of how it felt to be finger pointed at while trying to save your child's life. I'm lucky to live in Canada, during their 5-months stay in the hospital, I didn't receive any bill in the mail, not one.... Our health care paid for it and that was a great relief. Receiving these bills, then getting them covered by the insurance that you pay every month and every year is already a money stress, but being called out for it... WOW.

“Profits over humanity”: M’s Story

Thank you for having the courage and platform to share your powerful story. Not only has your family survived and thrived through a year that would havebeen impossible for so many others, you are taking on what so many continue to ignore in our collective slide to the bottom, the absolute loss of humanity in the drive to make the rich richer and the rest of us complacently dependent upon them.


As the mother of a premature baby, I understand the fear of pumping your "liquid gold" while your beautiful baby lay surrounded by glass and hookedup to tubes. I too, was fortunate to have what many would consider an excellent health benefit plan.  I am a social worker, who works specificallywith pregnant women and new mothers, and I see the difference every daybetween those who have benefits and those who do not.

I see the effects every day of profits over humanity, this has been happening more clearly to the poor in recent years, but it continues to creep ever higher up the class / employment status chain.

I thank you for putting yourself and your family's story out there, I hope it will help start a larger discussion about the absurdity of accepting the loss of a retirement plan, the future promised, expected and owed, while Tim or anyone else has the nerve to say they are enjoying record profits.  The utter offensiveness of trying to justify their attempt to steal from those who allowed them to enjoy those record profit margins is just so galling, especially since as you state, benefits are there to be used.  I know in my situation that yes, my employer does pay for my medical and retirement benefits, but I also pay an equal portion.  I don't even know the best way to describe how utterly saddened it makes me feel to know my son will grow up with this kind of worldview unless we collectively make some real changes.

“Unexplicable, misplaced shame”: Andrea Koslow’s Story

To have gone through a traumatic birth alone would be enough ... with all the hurt, PTSD, fear, exhaustion, confusion, conflicted feelings and even some unexplicable, misplaced shame.  At least that's how I felt when my daughter was born prematurely at 6.5 months. Together, we were in the hospital for over 2 months.  I didn't feel myself again really—until she was about 3.  She's 3.5 now and I'm different but really good. Strong. Happy, with incredible perspective.

I can tell you that things overall will continue to get better for you rentire family as the days pass.  You will feel better and stronger and your daughter will pull you forward. I want to thank you for your courage and in reminding me how strong we can be during the most challenging times. Your daughter will one day be so proud of her mom for having such courage.

-Andrea Koslow  

“A terrifying abyss”: Léo Lee’s Story

Leo Lee

Matilda is 9 now. She is still quite a bit smaller than all her other 9 year old friends. Her 5 year old sister is catching up! But size is no impediment. She reads at a 7th grade level and is very good at maths and science. She rides horses (which has always been her dream) and wants to be an equestrian jumper. She is known for being a kind nurturer at her small Montessori school. As the oldest in her age group (6-9) she mentors and guides the 6 year olds, almost to the detriment of her work. Her health has been fine, though she’s always frightfully skinny! Let’s just say she has to like capris, because it’s hard to find clothes that fit right. 

When Matilda was born, April 8th, 2006, Jon was out of town at a conference in Madison WI. We had moved to Texas 20 months before, and knew few people and have no family within 1000’s of miles. James, her 2.5 year old brother, was born on his due date, so that’s what we expected. It was a Friday rounding out an exhausting week. I picked James up from school and he looked tired. I looked tired. Later, his teacher said she should have warned me: she claims “I had that exhausted pregnant lady about to give birth” look. At supper, James started throwing up. At 1:30 amSaturday April 8th, I had one load in the wash, one load of sheets on the dryer. James was lying on a pile of towels after I stripped my last set of sheets off and dropped them next to the washing machine. I drank a glass of water, rubbed his back a bit as he moaned. At 2 am I finally went back to bed. The second my head hit he pillow, I felt my waters break. I literally jumped out of bed (I did not want to wash any more sheets. Because the carpet is so much easier to clean? Like I was getting back in that bed tonight?) and crouched on the floor and shouted “NOOOOOO!”, just like the movies. I knew that I could not get a shot to slow labour. My waters had broken, there was no turning back. I knew that at 2 am, Jon could not make it home in time. I knew that of the two friends I had met so far, one was in DC with her extended family, the other had a house full of strep throat. She was coming, almost 6 weeks early, I was alone with a puking toddler. 

“His Apgar score was 3”: Jay and Jamie Karr’s Story

Jay Kerr

My wife and I married when we were older, she at an age that Ontario considers high-risk for pregnancies.  We thought we’d be OK because my wife was a vegetarian and an aerobics instructor; we were both in good shape.

The fetus was diagnosed with a brain condition that, if he lived would leave our son severely disabled and this condition could not be confirmed until the time period would have elapsed for an abortion.

When our son was born, his Apgar score was 3, not very encouraging.

That was 26 years ago, Jamie became engaged last week, he holds a fourth degree black in Karate and is an Account Executive in a large advertising agency.

All the best, parenthood’s an amazing journey.

-Jay Karr