Article- Micro preemie parents decide: Fight or let go of their premature baby?

My coworker shared this article series with me and I wanted to pass it on to all of you!

This article provides an intimate look at the immediate months following the birth of a micro-preemie (child born before 25 weeks gestation).  Though it’s a long 3 part series, I highly recommend reading all of it because of all the intimate details the author (the mother of the baby girl discussed in the story) discusses from the birth to the 4 month stay in the NICU to the time after the NICU stay.

The article gives me some insight into what some of my patients have gone through before coming to see me in an outpatient therapy setting.  I usually ask about my patients’ NICU experiences, but am obviously not given the amount of detail that’s provided in the article.

Here’s a link to the article: Never Let go

Here’s a video with some extra info about the end of the article, so don’t view it unless you want to know how it ends!

I recommend at least clicking the link to also see some of the helpful links posted

 

Here are some highlights from the article:

A normal pregnancy lasts 40 weeks. I was only halfway there.
If the doctors had not intervened, my baby would have been a miscarriage. But the odds for her had not improved by much.
Early arrival kills more newborns than anything else, and complications from prematurity kill more babies in the first year than anything else.

Some babies are born so early they are beyond rescue. If a baby is born at or before the 22nd week, it is usually considered a miscarriage or a stillbirth. Almost no doctor will intervene, because there is nothing he or she can do.

Other babies ripen in the womb into the third trimester but arrive a little early. If a baby is born later than about 25 weeks, studies show that almost all doctors feel morally and legally obligated to try to save its life. Some preemies have serious medical problems, but most spend a few days or weeks in the hospital learning to breathe and eat and then they go home.

About one in 750 babies arrives in that awful window of time, suspended between what is medically possible and what is morally right.

One of them was born on April 12, 2011, at Bayfront Medical Center. My daughter.

Few doctors would insist on intervening. The choice was ours to make.

He went through the list of possible calamities, each with its own initials. IVH, PVL, RDS, CLD, ROP, CP. The magnesium sulfate burned through me, sucking the will from every cell. Blood in the brain. Hole in the heart. Respiratory distress. Chronic lung disease. Ventilator. Wheelchair. Blind. Deaf. Developmental delays. Autism. Seizures. Cerebral palsy.

Every part of her was underdeveloped, fragile and weak. Every treatment would exact a toll. She might live, but she would likely have, to use the medical term, profound morbidities.

Odds she would die, no matter how hard they tried: better than half.

Odds she would die or be profoundly disabled: 68 percent.

Odds she would die or be at least moderately disabled: 80 percent.

There was a 20 percent chance she could live and be reasonably okay. I pictured her in the slow class at school, battling asthma or peering through thick glasses. We would buy her pink sparkly ones and tell her they were cool.

I contemplated that figure: 20 percent. It didn’t seem hopeless. Then again, imagine a revolver with five chambers. Now put four bullets in it and play Russian roulette. Would we bet on a 20 percent chance if losing might mean losing everything we cared about? Would we torture our baby with aggressive treatment just so she could live out her life in a nursing home or on a ventilator? Would we lose our house? Would our marriage fall apart?

In between those scenarios is a zone between life and death, between viability and futility. If a baby is born after the 22nd week of pregnancy but before the 25th, not even the smartest doctors in the world can say what will happen to it. New technologies can sometimes keep these micropreemies alive, but many end up disabled, some catastrophically so. Whether to provide care to these infants is one of the fundamental controversies in neonatology.

“Do you want to hold her today?”
She was 2 weeks old. We had family arriving from out of town that day. Our nurse was one we hadn’t met before. I wondered if she knew what she was doing, or had missed the memo about how sick our baby was. I glanced around for doctors, or security personnel, who might try to stop her.

Then I just settled into the blue vinyl recliner and watched as a physical therapist spent half an hour massaging and calming my baby to prepare her for the 3-foot journey to my chest.

The therapist explained what should have been obvious. Babies need their moms. In the early days of neonatology, parents didn’t get to hold their sick babies. Now, doctors knew that even the most critical held their body temperature better, breathed better, digested food better and generally fared better if they spent time skin to skin with their parents.

All Children’s had designed this NICU to put families at the center, with round-the-clock visitation and an elaborate support system for breastfeeding.

Therapists like Ana Maria Jara helped the smallest babies navigate the divide between the safe dark nest of the womb and the bright stark world of the hospital. We watched her massage Juniper with the tip of her finger. Juniper’s face contorted into a silent cry, then relaxed. She melted into Ana Maria’s hands.

“They don’t listen to your words,” Ana Maria explained. “They listen to your feelings.” We called her the Preemie Whisperer.

Babies born earlier than 28 weeks’ gestation require an average of about $200,000 in medical care by age 7, said Dr. Norman J. Waitzman, an economist at the University of Utah. Waitzman worked on a major study in 2006 that put the cost of preterm birth in the United States at more than $26 billion per year.

The statements that arrived almost daily from our insurance company told another part of the story. It appeared that the neonatologist cost about $1,900 a day. A month in the NICU — presumably room, board and nursing care — was billed at between $200,000 and $450,000. Then there were the costs for surgeries, lab work and specialists. All together, Juniper’s care cost more than $6,000 a day. The statements would add up to $2.4 million, of which the hospital collected from the insurance company a negotiated rate of $1.2 million.

Waitzman said Juniper’s bill sounded typical for a baby born at 23 weeks. But because so few babies are born that early, their bills, however staggering, barely register in the big picture.

I held a sleeping baby in my arms.
It wasn’t my baby. This was a baby from down the hall, Jack Cole, who’d been born with Down syndrome. We’d met his parents when they were still shaken by the news that he needed surgery to save his life. Their faces had been clouded with exhaustion and fear, but something else, too. Joy.

Society seems fairly comfortable with Down babies. But in 1982, not so long ago, the parents of a Bloomington, Ind., baby with Down syndrome declined an esophageal surgery that would have saved his life. The case got national attention, and surgeon general C. Everett Koop argued that it was child abuse to withhold treatment to a baby because of a mental handicap. The Baby Doe case forced doctors, hospitals, and parents to confront how they make decisions about withholding treatment in disabled newborns, and how they weigh quality of life.

Thirty years later, parents still struggled with a diagnosis of Down syndrome, and many aborted their babies after prenatal testing. But once a child was born with the condition, there was more of a consensus in the medical community to provide treatment. Kids with Down syndrome were in Target ads. There was even one on Glee.

There was no such consensus when it came to the earliest preemies like Juniper. Maybe the issues were still too new. Maybe it was easier to confront a well-defined disability like Down syndrome than a buffet of probabilities.

Our night nurse, Kim Jay, began every evening with a quick prayer.

Please don’t let her die on my shift.

I made a poster and stuck it on the wall of Juniper’s room.

To Do:
X Survive birth
Breathe (ongoing)
X Heal tummy
X Win over Tracy
X 1000 grams
2000 grams
X Off the ventilator
Off oxygen
Lose chest tube
Dissolve blood clot
Learn to eat
Acquire pony

Tom added: Conquer space and time

I’m not dismissing the possibility of miracles. Certainly Juniper defied medical expectation and astonished doctors who aren’t easily moved. But it makes me uncomfortable to imagine it’s as simple as God laying his lightning-bolt finger on our baby’s head, passing over some other baby along the way. Passing over all those babies we saw lying under the sheets.

I only know that back in April, a young, inexperienced nurse looked at our baby at a critical moment and saw what machines had not seen. I know that one of the best nurses in the hospital risked her heart and went against her own judgment when she agreed to take Juniper on. I know a doctor facing an impossible decision looked into our baby’s eyes and told God he was in control before ordering a risky surgery. I know the surgeon thought our baby was beyond repair, but somehow fixed her anyway. I know a 1-pound baby found the will to keep going day after day, until finally some version of the world that awaited her came into focus.

She’s 20 months old. But when people ask, I say she’s 16 months old, because that’s how old she would be if she’d been born on time. “So tiny!” they say. She weighs 18 pounds. Can’t they see she’s huge?

People ask if she’s fine. I hesitate. The superstitions of the hospital have become part of me. I have learned how fast things go from fine to not fine. From fine to everything flying apart, everything unrecognizable, everything lost. Is she fine now? She’s here. She’s ours. She’s magnificent.

She walks and runs. She does not need glasses. She feeds herself. Our ceiling is stained with blueberry yogurt. She sat up, crawled, took her first step, scrawled with crayon, all on schedule. The other day, I heard her laughing, spun around, and saw her standing naked on the coffee table, waving her diaper in the air.



Categories: Child Development, News Articles

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