Pre-Eclampsia Awareness Week

I just discovered that this week is Pre-Eclampsia Awareness Week.

I had never even heard of pre-eclampsia until a friend of mine told me it was the reason she needed to have her baby delivered 8 weeks early, four years ago. To be honest, at that time I didn’t have any idea what she had been through. Since my daughter was born I’ve met a lot more women - mostly via L’il Aussie Prems - who suffered from this very serious and sometimes life-threatening medical condition and whose babies were born prematurely as a result. In fact even two friends in my new mothers’ group who were able to have full term babies also suffered from pre-eclampsia in the late stages of their pregnancy. It’s a lot more common than I had previously imagined.

The Australian Action on Pre-Eclampsia (AAPEC) has a website at http://www.aapec.org.au with a good FAQ and stories from people who’ve been through it personally.

Luke Shah’s a hero as scientists understand the premature brain

LUKE Shah is only five, but he’s set to help thousands of premature babies.

Born almost three months early, Luke is one of 138 Victorian children whose brains were scanned as newborns as part of a world-first study.

Six years into the project, researchers from Melbourne’s Howard Florey Institute are now sending their subjects, including Luke, back to the scanner.

The long-term aim is to match brain abnormalities in premature babies with the problems they typically face later in life - and then prevent them.

Scientist Deanne Thompson, who presented the study at last week’s international Human Brain Mapping conference in Melbourne, said the key was in monitoring the “white matter” that links the two sides of the brain.

“Premature infants have a reduced connection between the two hemispheres and often have difficulties with thinking, reasoning, problem solving and language,” she said.

“So if we can identify that a baby is likely to have certain learning difficulties, for example (by looking at their brain scan), treatments such as speech therapy can be targeted to them early.”

Editor - Evonne Barry, Health reporter

Article from Herald Sun 

PREMMIE HEALTH

When you have a premature baby, suddenly you find yourself in an unfamiliar hospital environment where staff talk about medical conditions you may never have heard of before. L’il Aussie Prems is pleased to bring you a series of short articles which aim to explain some of the conditions which affect premature babies. You might find these overviews useful when you want to tell your friends and family about issues faced by your premature baby.
Remember that each baby is different, and you should always consult a medical professional about circumstances which relate specifically to your child.

Newborn Jaundice

What is it?
Jaundice is a yellow discolouration of the skin and the whites of the eyes caused by hyperbilirubinemia (which means increased levels of bilirubin in the blood). Jaundice occurs in both full term and premature newborn babies, but is much more common in premature babies.

Why does it occur?
In the human body, new blood cells are being made all the time and old blood cells die. Soon after a baby is born, its body will start replacing foetal haemoglobin (the blood used by the developing foetus which enables oxygen to be transported via the umbilical tube) with adult haemoglobin (normal blood). One of the products of blood as it breaks down is called bilirubin. Bilirubin is normally filtered by the liver and then leaves the body via a bowel movement.

Premature babies tend to develop jaundice because their livers are too immature to remove the bilirubin from their blood, so it builds up and spreads to other tissues in the body. This is also known as physiologic jaundice. Bilirubin is a yellowish colour, which is why the baby’s skin takes on a yellowish tint.

Jaundice can also be made worse in a small number of babies by certain health problems such as having a different blood type from the mother.

Why is it a problem?
Jaundice is not usually a serious problem, although premature infants may be more sensitive to the ill effects of excess bilirubin. Extremely high levels can be toxic, as bilirubin may enter the brain, causing hearing problems and brain damage. However babies in hospital are carefully monitored and treated quickly before their bilirubin reaches dangerous levels.

How is it treated?
Doctors use a blood test to check the bilirubin level.
Moderate jaundice is treated by placing your baby naked or near-naked (with a protective mask over the eyes) under a special white or a bluish-coloured light. This is called phototherapy and can be delivered in many different ways safely, including via the use of special fibre-optic bili-blankets. The light breaks down the bilirubin in the skin into a substance that the body can excrete more easily. Usually phototherapy is needed for about a week, and after that, the liver is mature enough to excrete bilirubin on its own.

In cases of severe jaundice where phototherapy is not effective, a baby may need to have a special blood transfusion in which their blood is replaced (exchanged) with donor blood to wash the bilirubin out of their system.

Are there any long term problems from jaundice?
There are usually no long-term problems following jaundice in babies. Babies who have had high levels of jaundice should have their hearing checked at regular intervals. This is best discussed with your doctor or early childhood nurse. Brain damage due to very high levels of jaundice is now extremely rare because the levels are carefully monitored while babies are in hospital.

Premature girls get more from breast milk

Premature baby girls appear to get greater benefit from breastfeeding compared than premature baby boys, according to new research.

Researchers from Johns Hopkins University in the United States tracked a group of premature infants in Argentina to gauge the protective effect of breastfeeding against respiratory infections in babies.

The results of their research are published in this month’s edition of Pediatrics.

They found that infant girls who were breastfed were far less likely than baby boys who were breastfed to develop serious respiratory infections requiring hospitalisation.

Previous research has shown that breastfed babies receive a range of health benefits compared to those given baby formula.

These range from combating respiratory infections, fewer ear, stomach or intestinal infections, digestive problems, skin diseases and allergies.

“There are many, many different diseases that are protected against by breast-feeding. It’s a great source of nutrition,” Dr Fernando Polack of Johns Hopkins University says.

“In the specific case of acute respiratory diseases like bronchiolitis and viral infections of the respiratory tract, it seems that there is greater benefit in girls than in boys. And that benefit is substantial.”

Breathing easier

Bronchiolitis is an infection of the airways of the lungs seen most often in infants between about 3 and 6 months old.

The researchers studied a group of 119 high-risk infants who weighed under about 1.5 kilograms at delivery. This population is highly susceptible to these kinds of infections, Polack says.

Fifty per cent of the baby girls who were formula-fed had to be hospitalised when they experienced their first respiratory infection, compared to about 7 per cent of the girls who were breastfed, the researchers write.

There was no difference between the boys who were breastfed or formula-fed, with about 19 per cent of both groups needing hospitalisation when they got their first respiratory infection, the researchers said.

The pattern repeated throughout the first year of life and in subsequent infections, the researchers say.

Polack said there may be something in the breast milk that better activates a baby girl’s ability to cope with such infections more so than it does for a baby boy.

Article from ABC Science 

Premature Babies Need Cuddles

Cuddling up against their mother’s bare skin can help babies born as early as 28 weeks recover more quickly from the painful medical procedures, a new research suggests.

According to the Canadian study, very premature babies benefit from skin to skin contact with their parents. Writing in the journal BMC Pediatrics, the McGill University team said it might aid the recovery process.

This study is the first to look at extremely premature babies, born between 28 and 31 weeks. It was previously thought by some experts that such young babies were not developed enough to benefit from human touch.

A common test used in neonatal units is the “heel prick” blood test, which produces a sample, which can be used to check blood sugar levels.

This is inevitably painfill for the baby, and in some cases, it can take minutes for this distress to recede which could be a problem for a baby whose health is in the balance.

In the study researchers carried out the test on some babies who were being actively cuddled, skin-to-skin, measuring facial expressions, heart rate and blood oxygen levels to assess the amount of pain suffered.

Pain scores after 90 seconds for the cuddled babies were much lower than for those who were not cuddled. Half the cuddled babies did not show any facial expression of pain when undergoing a heel prick test. Lead researcher Celeste Johnston said that the shorter recovery time could help maintain the baby’s health.

“The pain response in very preterm neonates appears to be reduced by skin-to-skin maternal contact,” BBC quoted her, as saying. Professor Linda Franck, from the Institute of Child Health in London, said that parents were often not encouraged to have skin-to-skin contact with their premature babies in UK neonatal units, despite growing evidence that it could help.

She said: “Neonatal units can be very intimidating places, and parents often do not know the best way to get involved. Parents want to do the right thing, but the message is difficult to get out there.”

“This study suggests that, even for the very youngest premature babies, skin to skin contact can reduce the stress response.”

Article from

Premmie RSV Stories

The National Premmie Foundation is holding National Premmie Day on Friday 25th July 2008. The theme will be an awareness week of RSV. The Foundation wants to put together a number of stories about prems, the risks of RSV and the effects it has on families. Would you be happy to let the Foundation use your child’s story?

What is needed in your recount is: birth details including the amount of time he/she spent in hospital following their early arrival, details of ongoing medical problems, the number of times he/she has been hosptalised for RSV/Bronchiolitis (including the length of each hospital stay), was your child tested for RSV on admission, were you given details of whether or not your child’s bronchiolitis was RSV positive, anything that the doctors might have said about your child being susceptible to the virus in the future, details of how your child’s hospitalisation has affected you and your family, whether you are or were aware of what can be done to prevent RSV (including any preventative drugs).

Please do not feel obliged to contribute, the decision is entirely yours. You can also provide photos of your child at birth, during any subsequent hospital admissions for RSV/bronchiolitis, and now. Your assistance would be greatly appreciated.

You can forward your story & photos to contact_us@prembaby.org.au

www.prembaby.org.au

Sound Monitors Protect Premature Babies

NDIANAPOLIS — Warning lights hover over the snoozing patients in Riley Hospital for Children’s neonatal intensive care unit, ready to flash whenever sound levels creep beyond normal conversation. As decibels rise, the colors on the new monitoring system change from green to yellow to red, hushing chatty parents or doctors so the babies get the rest they need to develop.

Noise louder than roughly the level of conversation can cause premature or sick babies’ hearts to beat too fast or too slowly, said Dr. William Engle, a neonatologist at Riley. And interfering with babies’ vital signs or sleep can slow development and healing because their bodies do most of that work while they sleep.

“The function of babies is to grow and develop, and in between they eat,” he said.

Preemies also need quiet so they can learn their mother’s voice and their brains can figure out how to process sound, things that normally happen in the last trimester before birth.

“It’s definitely a great idea,” Dr. Bob White, a neonatologist at South Bend’s Memorial Hospital, said of the monitoring system in Riley’s neonatal intensive care unit, or NICU.

White, who is not involved in creating or distributing the system, helped write national noise standards for NICUs that have been adopted by the American Institute of Architects and are used in most hospital design.

Inventor Chris Smith hopes doctors around the country agree with White. He has sold his Sonicu system to several Indiana hospitals and wants to expand nationally.

Smith, 43, had no training as a sound engineer and no plans to become an entrepreneur when his son Sean was born five weeks premature in 2000. But he noticed Sean flinch in response to bright light in the NICU of St. Vincent Indianapolis Hospital, and he wound up designing a system to soften the unit’s lighting.

Then the nurses asked him what he could do about sound.

“That’s really when I realized that there was no good way out there to measure sound, other than your standard, hand-held meter,” he said.

Babies born too soon lose the muffling effect of the womb before their ears can filter sound, White said.

“The sounds … come from all different directions and all different sources, and they’re often associated with unpleasant sensations for the baby,” White said.

NICUs are rife with noise pollution created by employees, equipment and excited family members.

“There’s no good way for the nurses or doctors to walk up to a parent, tap them on the shoulder and say, ‘You’re being too loud,’” Smith said. “That’s confrontational.”

The former car mechanic filled hours of spare time in the evenings and on weekends researching sound standards and building a system.

Smith, who tinkered in radio and TV electronics in high school, hired an acoustical engineer to help. They created a ceiling-mounted system of microphones that picked up sound and funneled data back to a large control panel.

“There was a lot of wiring, a lot of labor, a lot of programming,” he said.

St. Vincent paid around $100,000 for the system, which it installed about five years ago. Smith had no interest in shopping his invention to other hospitals because the work took so much time.

Then Riley Hospital, also in Indianapolis, called a few months later.

“They basically said, ‘I want that,’” he said.

The latest version of Sonicu can feed a stream of both sound and light data digitally to a computer. It offers the cone-shaped warning lights and can quickly dim the lighting in a room that gets too noisy. It also can make lighting mimic the sun by brightening toward noon and then fading, which also helps babies sleep well.

White, the neonatologist who helped write the national standards, said he knows of no other NICU monitoring system that sophisticated.

Smith has sold systems to a handful of Indiana hospitals, so far to good reviews. He said the systems can cost anywhere from $40,000 to $400,000, depending on each hospital’s needs.

The monitors have taught hospital staff to limit the number of groups making rounds at the same time because having more than one group in a room raises noise levels dramatically.

Most NICUs are filled with noise that can’t be helped, White said. Fans in the heating and ventilation system have to operate almost constantly, and the monitors need to beep.

The Sonicu system reins in the main noise maker that can be controlled.

“People think, ‘Oh gosh, I didn’t realize, I’ll go over here so I won’t have to talk so loud,’” White said. “It really is something that addresses the human factors that we do have some control over.”

Story from Washington Post

The Murdoch Childrens Research Institute

The Murdoch Childrens Research Institute development board invites you and your family to Discovery Day a family picnic day hosted by our patron Dame Elisabeth Murdoch AC DBE in her beautiful gardens at Cruden Farm.

Sunday 24 February 2008 10am - 3pm

Tickets
$40 for adults, all children free. LIMITED TICKETS AVAILABLE. The event will go ahead in all weather, no refunds. Please take special care with children as there is an unfenced lake on the premises.

What to expect
All kinds of musical performances, roving entertainers, music and dance workshops, SpongeBob Square Pants, Patrick Starfish & Dora the Explorer, clowns, face-painting, pony rides, animal farm, jumping castles, Dorothy the Dinosaur, DJ David Southwick plus many other stage shows, retail stalls, amazing raffle prizes and giveaways for all children.

What to bring
A rug & picnic. Food available on the day includes sausage sizzle, Splitrock drinks, Aded Flavour sandwiches & cupcakes, Gravity coffee, New Zealand Natural ice cream & sorbets, Sunny Ridge strawberries, Bird in Hand wines & Southern Bay Brewing Company beer.

Getting there
Cruden Farm, Langwarrin (enter via Cranhaven Road, Melway reference 103 G6)

100% of proceeds go directly to the Murdoch Childrens Research Institute.

Murdoch Childrens Research Institute conducts innovative research to help ensure all children lead happier, healthier lives.

Cruden Farm Project Group
Jackie Bursztyn, Romy Bursztyn, Susannah Calvert-Jones (chair), Narelle Curtis, Victoria Lord, Linda McNaughton, Jill Murray, Susie O’Neill, Candy Rosenbaum, Lana Sheezel, Ellie Smorgon, Michelle Wenzel.

Development Board
Lisa Bond, Susannah Calvert-Jones, Suzi Carp (chair), Narelle Curtis, Tony Davies, Ben James, Marisa Leone, Victoria Lord, Sarah Murdoch, Sam Patterson, Angus Reynolds, Emma, Rosenberg, Fiona Rowland.

For more information please visit www.mcri.edu.au

Helping Premature Babies Breathe Easier

I was forwarded a link to the Australian Synchrotron Science about a case study being performed by ~ The University of Queensland.

This is the information they provided on their website:

We need a layer of natural lung surfactant NLS that is just 1 molecule thick to breathe. Premature babies lack NLS.

• Animal-based and synthetic alternatives are used to help babies breathe but better treatments are needed.
• A team at The University of Queensland has used synchrotrons in the USA and Japan to provide critical information for understanding the structural changes that take place in NLS every time we breathe.
• The aim is to create a safe, effective artificial lung surfactant that could be used to help premature babies and adults with lung problems.

Ronan was born with Chronic Lung Disease and was on oxygen for 3 months. I can only imagine how much better his lungs would have been had this been available when he was born. If successful this would be a HUGE step towards helping a premature baby and his/her lungs. From my understanding one of the biggest complications/issues with having a premature baby is their lungs because of the lack of lung surfactant if the baby is born before 30 weeks, although i could be wrong with my gestation calculation. The university is doing an amazing job and i look forward to hearing about it’s release here in Australia in the years to come.

Coping post NICU

I rode the lift to the fifth floor just as I had every day for the first 148 days of my child’s life. This time however, was different. We were going back. Only for a follow up appointment but the squirming, uneasy sensation in my stomach and my sweaty palms didn’t seem to know that.

My heart pounded as the computerized voice declared “Fifth, fifth, floor, floor” and the doors slid open. We turned the corner and suddenly the corridor I’d walked down hundreds, possibly thousands of times, looked immensely longer than it ever had before and then there was the smell of the antibacterial hand soap. While Erin was in hospital I didn’t mind it, in fact I liked it, it reminded me of her, now though, it brings back the fear and hurt that I’d repressed while in the thick of things.

Since we’ve been home I’ve noticed a sharp increase of flash backs, crying spells and imaginings—I swear I sometimes hear patient monitors and alarms. I don’t know if what I’m experiencing is Post Traumatic Stress, “just” depression or something else entirely. Maybe this is one of those lovely “normal” things that NICU parents get to experience. Whatever it is it doesn’t feel normal.

When your baby’s in hospital you don’t have time to deal with the emotional baggage that piles up as a result of having an early and possibly sick baby. You simply don’t have time and if you go to pieces who’s going to deal with the hundred and one things you need to do to keep your life going? No one. So you keep going and your baggage keeps piling up until you come home with a baby who cries for no reason, wants to be held at all hours of the night, who either, doesn’t eat and doesn’t grow or wants to eat all the time but still doesn’t grow!

So now you’re a crazy bag lady with a baby tucked under your arm, nappies piled in the corner, bags under your eyes that could easily accommodate your NICU baggage and armpit hair down to your elbows from a months worth of showers aborted due to screaming! At some point you’re going to explode and it’s not going to be pretty.

But you don’t because if you do who’s going to look after the baby, the house, the husband and any other kids you may have and where did that cat come from? Instead you wait for that rare moment when the baby’s quiet and you’re FINALLY alone and you just cry or you don’t because you’re afraid that if you start to cry you may never stop. Instead you just go silently crazier.

There are no answers in this post. I don’t know how to deal with what I’m feeling; I don’t even know what to call it. Somehow I think finding a name would help.

Visit our forum and discuss how you’re coping now that you’re home

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