Rachael Guymer was 12 weeks pregnant when doctors told her the baby had a condition she had never heard of.
A $50 million upgrade of the Canberra Hospital is underway
Improvements have been made to the Paediatric High Care Ward, where young patients can be kept safe from infections
Baby Leo has been receiving treatment in the ward for two months
Leo, now four months old, was diagnosed with gastroschisis, where an opening, or stoma, develops in the abdominal wall.
It causes the bowel to push through the opening and develop outside the body.
Soon after his birth, Leo underwent surgery and has since had two more.
Next week, he will have yet another operation, to reverse his stoma.
‘It’s been a journey’
In a short time, Rachael said she had gained more knowledge than most parents of newborns.
She can describe the purpose of every piece of equipment working to help her son grow stronger.
“So this is a PICC [peripherally inserted central catheter] line and it goes to his heart, because of his stoma, and his bowel,” she said.
“He isn’t able to maintain nutrition on his own so this TPN, and lipids, gives him the nutrition he needs to grow and improve.
“He’s had a lot of issues.”
Those issues include a blood clot in the main vein nearest to his heart, which was removed.
Leo has so far spent two months in the Canberra Centenary Hospital’s Neonatal Intensive Care Unit (NICU) and two months in the newly refurbished Paediatric High Care Ward.
The ward is where children aged anywhere between seven days and 17 years go when they need a place safe from infection to recover.
Leo’s parents are eager to have him come home with them to Griffith in the Riverina, where they live with their other two children.
But for now, the hospital is Leo’s home at least until the New Year — his return to Griffith depends on how he recovers after his next surgery.
Improving quality of life on the ward
It was with this uncertainty in mind, and the knowledge that many families spend months in hospital, that upgrades were made to the ward.
The refurbishment was part of an ongoing $50 million expansion of the Centenary Hospital, expected to continue to roll out over the next three years.
The changes to the ward included extra windows, installed between patient rooms and staff, which assist nurses monitoring the patients, Clinical Director of the Division of Women, Youth and Children Boon Lim said.
But the windows can be switched off when the moment calls for it, allowing for privacy, Clinical Nurse Manager Donna Colwill said.
“There’s a switch both inside and outside the room for staff to press,” she said.
“So that parents can have some quiet time without seeing what’s going on.
Other measures to improve comfort for families and patients include upgraded beds for carers who stay overnight, as well as negative and positive pressure rooms, for those children at very high risk of infection.
And a local artist has leant their hand to a mural, employing soft colours and friendly faces.
Ms Colwill said it would take time to see what impact these subtle changes would have on the health outcomes of the children in their care.
But in the meantime, its a more comforting environment for patients, families and even staff, Dr Lim said.
“They love it — it gives them a sense of extra space and a better working environment for them,” he said.
A strawberry-flavoured tablet for children living with HIV will be rolled out in African countries in 2021, the first generic pediatric version of a key anti-retroviral available even for babies, aid agencies said on Tuesday, World AIDS Day.
Some 1.7 million children worldwide live with HIV, but only half receive any treatment — often hard to administer due to the bitter taste or incorrectly dosed by crushing adult pills, the global health agency UNITAID said. Some 100,000 children die of AIDS annually.
“For many of those children, the HIV virus is not suppressed due in part to lack of availability of effective drugs that are palatable and properly adapted for them,” UNITAID spokesman Herve Verhoosel told a Geneva news briefing.
UNITAID and the Clinton Health Access Initiative have reached a pricing agreement with the generic drugmakers Viatris and Macleods for the dispersible pediatric formulation of dolutegravir, a statement said.
The first-line HIV treatment is recommended by the World Health Organization (WHO) from the age of four weeks and three kilograms, but it had been out of reach for babies because of the lack of appropriate formulations.
The estimated cost for combination therapy will now be some $120 US for a child’s annual treatment, against $480 currently, UNITAID said.
Benin, Kenya, Malawi, Nigeria, Uganda and Zimbabwe are due to receive the first tablets in the first half of 2021, Verhoosel said.
The Public Health Agency of Canada said this year that the COVID-19 pandemic has heightened challenges for people living with HIV and those who are most at risk for contracting the infection.
“For many, accessing culturally safe and timely HIV prevention, testing, treatment and care is more difficult than before,” the agency said in a statement on Tuesday.
The federal government recently authorized the first HIV self-test kit in Canada. The one-minute self-test allows people to detect if they have an HIV infection through a single drop of blood, Health Minister Patty Hajdu told reporters.
Packaging included with the test provides advice on what to do following a positive result.
Tuesday also marks the beginning of Aboriginal AIDS Awareness week in Canada.
Hospital coronavirus restrictions have presented yet another challenge for parents of premature babies, with just one parent at a time allowed into South Australian hospitals during the height of the pandemic.
Sophie Smith started Running for Premature Babies after the death of her triplet sons 14 years ago
People across the country have since laced up their shoes to raise nearly $4 million
The charity raises funds for lifesaving neonatal equipment in hospitals
But families have found a way to support each other and raise money for neonatal services around the nation — with a virtual marathon.
After an incredibly turbulent pregnancy, Dani Walker went into labour at 24 weeks, giving birth to her daughter Mahlia Violet, who weighed just 420 grams.
Already in her short nine months in this world, Mahlia has had seven surgeries, 40 blood transfusions and countless tests.
“Day nine, she had a bowel perforation from an issue that premmies have called necrotising enterocolitis (NEC, a medical condition where a portion of the bowel dies) — she had to have surgery for that.
“She had a whole lot of other complications along the way: septicaemia, chronic lung, issues with her eyes that needed surgery.”
Premature babies at risk of complications
On top of that, Mahlia became one of the five babies at the Flinders Medical Centre who tested positive to an extremely rare bacteria in June.
A handwashing basin near in the neonatal unit where Mahlia was housed for nearly 100 days was later identified as the source and removed.
Things were looking up for the Walker family when they got Mahlia home 130 days later.
“It was really special to have both our girls together and we thought we got through the absolute worst of our journey and that we could move forward with her journey and have her thrive at home,” Ms Walker said.
Mahlia was only home for four weeks when she had another complication.
“We could tell she was in pain with something … her bowel had basically turned on itself and cut off the blood supply,” Ms Walker said.
“But where her small bowel joins her large bowel that had closed off, so she had to have a further laparotomy, so she lost that last bit of small bowel and her ileocecal valve, which is quite important from an absorption and feeding point of view.
“It was so tough. We had this healthy, happy, beautiful baby at home and then we had this baby who was really sick again and fighting for her life once again.”
Coronavirus restrictions another challenge
Ms Walker said COVID–19 restrictions became another challenge in an already difficult time, with she and her husband unable to be in the ward at the same time.
“When you’re going through surgeries and life-threatening illnesses, it’s really difficult to have to do that alone and not have the support of family around that would normally be able to be there,” Ms Walker said.
“It was incredibly challenging for us as a family unit because our grandparents would have liked to spend more time with her.
“Our daughter wasn’t able to spend much time with her [but] she was allowed a few exemption visits, which was amazing, and that made all the difference for her and her mental health and her bonding with her sister.”
During the first wave, SA Health restrictions meant there was a limit of one person per patient in nurseries.
Those restrictions still apply at the Women’s and Children’s Hospital now, while the Lyell McEwin Hospital and Flinders Medical Centre are allowing two people per patient.
“Extra isolating when you’re already isolated and you’re already in your own lockdown — you’re already not living a normal life anyway, so that makes it even more difficult,” Ms Walker said.
Parents come together for support
The isolation is something mother Amy Purling knows all too well.
She started an online community to connect families of premature babies after watching her sons Jack and James fight for their lives.
“Parents of premature babies are at higher risk of mental health problems — post-natal depression and anxiety — so throw COVID into the mix and the isolation and the anxiety around that [is very high],” Ms Purling said.
Ms Purling is one of almost 600 people around the country who have run 42 kilometres for the charity Running for Premature Babies to connect and support other families dealing with premature birth.
The run is also raising money for neonatal services around Australia.
“This marathon is really important for the community, so I think one of the big things about this run is not only is it Prematurity Awareness Month, which is November, which is really important for this community, but it’s also during this lockdown here in South Australia,” Ms Purling said.
‘Determined something good could come from their lives’
Sophie Smith started Running for Premature Babies 14 years ago after the death of her triplet sons, who were born at just 24 weeks. Henry lived for one hour, Evan lived for 10 days and Jasper lived for 58 days.
She said people from every single state and territory, and even other countries, had laced up their shoes to run.
The charity has raised more than $200,000 for life-saving state-of-the-art neonatal equipment for the Alice Springs Hospital neonatal unit and the Royal Hospital for Women in Sydney.
“In Alice Springs, we’re going to be providing some new humidicribs to replace the machines they’re using that are more than 20 years old,” she said.
“While in Sydney we’re providing a humidicrib called a Babyleo humidicrib, which has been described as the next best thing to the womb and a very specialised ventilator.”
In Australia every year, 26,000 babies are born prematurely, many of whom need neonatal intensive care, which is extremely expensive.
Ms Smith hopes to continue providing critical equipment for hospitals across Australia for years to come.
“I know firsthand how the best equipment is needed to give babies the best chance,” she said.
AsianScientist (Nov. 17, 2020) – Using animal models, scientists in Singapore have shown that expectant mothers can pass allergies onto babies developing in their wombs. Their findings were reported in Science.
Whether it’s a reaction to shellfish, soy, dust or dairy, allergies result from an overly enthusiastic immune response. Whenever we encounter an allergen, our immune system kicks into overdrive, producing immunoglobulin E (IgE) antibodies that trigger a cascade of chemical reactions. Eventually, this cascade leads to the classic symptoms we associate with allergies: sneezing, runny noses, rashes and even swollen lips, among many others.
With 10 to 30 percent of the world’s population affected by allergies, researchers are searching for novel ways to lower these numbers over time. This led a team from the Agency for Science, Technology and Research (A*STAR), KK Women and Children’s Hospital (KKH) and Duke-NUS Medical School to retrace the origins of these allergies.
“Allergies begin very early in life,” said study co-author Associate Professor Ashley St. John from Duke-NUS Medical School. “Infants experience allergic responses closely linked with the mother’s allergic response in ways that cannot only be explained by genetics.”
To investigate allergies’ maternal link, St. John and her team exposed mice to ragweed pollen, a common allergen, before inducing pregnancy. Mice that developed a sensitivity to ragweed had offspring that immediately had the same reaction to the allergen. In comparison, adult mice typically need to be exposed twice to an allergen before developing sensitivity.
Dust mites, another common allergen, had no effect on the offspring. This means that the transfer of sensitivity is allergen-specific. Notably, the transfer of sensitivity appears to fade with time. While the newborn mice had allergic reactions when tested at four weeks, there was less or no reaction at all at six weeks.
Through cellular tests and imaging, the authors then showed that maternal IgE travelled across the placenta to bind to mast cells found in the fetus’ immune system. Once bound, these mast cells release chemicals that trigger the symptoms of allergic reactions—explaining the transfer of sensitivity.
It turns out that another protein, called the neonatal FC receptor (FcRN), facilitates the transport of IgE across the placenta. Notably, knocking out FcRN in pregnant mice resulted in offspring with no maternal IgE attached to their mast cells and no allergies after birth. Further studies showed that maternal IgE can also bind to human fetal mast cells, suggesting that they might cross the placenta in humans in a similar way.
Moving forward, the authors hope to dive deeper into the mechanism of IgE transfer through the placenta as well as the effects of IgE binding to mast cells found in fetal skin.
“Our research has exciting findings that may explain the high incidence of early onset atopic dermatitis (eczema) in children of mothers with clinically proven eczema,” said study-co-author Professor Jerry Chan from KKH. “[This study is] key to developing strategies to reduce the chance of eczema or other allergies from being transferred from mother to baby.”
The article can be found at: Msallam et al. (2020) Fetal Mast Cells Mediate Postnatal Allergic Responses Dependent on Maternal IgE.
Source: Duke-NUS Medical School; Photo: Hu Chen/Unsplash. Disclaimer: This article does not necessarily reflect the views of AsianScientist or its staff.
Access to a life-saving and life-changing medicine will soon be expanded for Australian children and infants with Spinal Muscular Atrophy (SMA), thanks to a breakthrough medicines listing on the Pharmaceutical Benefits Scheme (PBS).
From 1 December, subsidised access to the life-changing medicine Spinraza® (nusinersen) will be expanded to include children and infants genetically diagnosed with the most severe types of SMA before the onset of symptoms (pre-symptomatic).
SMA is a rare inherited genetic muscle wasting disease characterised by a loss of motor neurons. It causes progressive muscle weakness and wasting, and its most severe forms can cause paralysis and death.
Without the subsidy, families would pay more than $367,000 a year for treatment. From 1 December families and their children will be able to access this life changing medicine for $41 or $6.60 per script with a concession card.
Approximately 18 children and infants, and their families, are expected to benefit from this expanded PBS listing per year.
The expanded listing of Spinraza will allow infants and children, diagnosed with SMA through a genetic test, to start treatment prior to the onset of symptoms.
This means children and infants diagnosed with SMA will be able to commence treatment with this medicine from birth and up to three years earlier, which is so critical to address the impact of this debilitating condition.
The least amount of damage to a child’s motor neurons occurs when they are pre-symptomatic.
The medicine works by slowing progression of the disease. In many cases, it can halt the progression of the disease or significantly improve motor function.
Starting treatment early is critical to halting the impact of this significantly debilitating and life-threatening condition, and preventing irreversible impacts.
Left unaddressed, infants with SMA struggle to meet the simplest of development milestones such as holding their head up, sitting up by themselves, walking and standing.
One in 10,000 live births in Australia are affected by SMA and the disease is the number one genetic cause of death of babies under two in Australia. There is no known cure for SMA.
One in 35 people in Australia unknowingly carry the faulty SMA gene. Being a carrier does not mean you are affected by the condition.
Spinraza is the first and only treatment of its kind to be listed on the PBS for SMA. It was first listed on the PBS in June 2018, and so far over 160 Australians per year are being treated with this medicine.
This PBS listing was recommended by the independent Pharmaceutical Benefits Advisory Committee (PBAC).
Since 2013, the Government has approved more than 2,500 new or amended listings on the PBS. This represents an average of around 30 listings or amendments per month – or one each day – at an overall investment by the Government of $11.8 billion.
The Government’s commitment to ensuring Australians can access affordable medicines when they need them, remains rock solid.
The independent medical experts on the PBAC have been considering an application to expand the listing of Spinraza for the treatment of adults. An update on these deliberations will be provided on 18 December on the PBS website at: https://www.pbs.gov.au/pbs/home.
Seven years ago, a group of nine pregnant women met in an antenatal class at Adelaide’s North Eastern Community Hospital.
Now, with a combined 22 children between them, the mothers group — who call themselves the “Maybe Babies”, as they were all due to give birth in May 2013 — is still close.
The group meets at least once per fortnight and continues to celebrate milestones in their own personal lives as well as their children’s lives.
There are many benefits in joining a mothers group, including peer and social support, and most importantly, social interaction that experts say is protective against postnatal depression.
North Eastern Community Hospital’s gynaecologist and obstetrician Valerie Thompson said it was important for new mothers to be a part of a group as it provided social support.
“In the early months and days, it is a very big adjustment,” Ms Thompson said.
“Social support is really important because it can protect against postnatal depression and PND is really common.”
Three-month-old Oscar Cameron is the youngest child in the group.
“I mean we went from the newborn stage to the terrible-twos, we sent all of our kids off to school last year, so going through all of those experiences together is just fantastic,” said his mother Louise Cameron.
“It’s very daunting when you leave the hospital and you come home with a newborn baby, and you know you’re not going to know everything, but when you’re in a mums group with eight or nine other girls sharing resources and information it’s just really nice.”
Robyn Curtis said they “all clicked”.
“Seven years later here we are,” she said.
The children have also formed special bonds.
“We have lots of friends to play with,” said Eli Curtis, 7.
Babies under one year of age should not be given honey due to bacteria that can cause Infant Botulism. Learn what this is and some of the other reasons to avoid feeding your little one honey.
The Danger of Giving Babies Honey
Honey is to be avoided when feeding under 1s because of the risk of Infant Botulism.
Infant botulism is a rare but serious illness that occurs when infants ingest toxins from a type of bacteria which live in soil and dust (that can contaminate honey.)
Symptoms of infant botulism include
loss of appetite
a weak cry
Once an infant reaches one year, they are not usually affected because their digestive system is more mature and are able to destroy the production of the toxin.
What About Honey as an Ingredient?
To help prevent infant botulism, avoid giving your baby both homemade or processed foods containing honey.
Additional Reasons to Why Honey Should Not Be Given To Babies
Other reasons not to add honey to your baby’s food and drink include
Damage to emerging teeth
The earlier you introduce added sugars (such as honey), the more likely your baby is to prefer and choose sweet foods into childhood and adult life. Remember babies can’t miss what they have never tried.
Many more couples are using IVF to try to have babies since the coronavirus epidemic forced a lockdown on the country. Canberra fertility specialist Dr Tween Low thinks it’s because the seriousness of the crisis has made couples think hard about what is important in their lives – and having a baby has come out on top. “With the pandemic and the time people have on their hands, the coronavirus may have helped crystallise what is important for them,” Dr Low said. In-vitro-fertilisation was one of those procedures which was banned at the height of the lockdown. Initially, Dr Low thought the upsurge once she was allowed to resume work was because couples feared the block would be re-imposed. But there has been no easing of heightened demand which makes her think that couples have refocused their values towards family. Across the country, there was a 15 per cent rise in couples seeking IVF in the two months after the procedure was allowed again compared with the same period last year, according to Genea, one of Australia’s providers of IVF and other infertility treatments. Genea Canberra has decided to offer financial support to couples. A cycle of IVF involves collecting eggs from the woman, fertilising the eggs in a laboratory and then inserting the embryo back into the woman. It is a delicate and complex procedure which costs a couple about $10,000 for each cycle. Half is usually paid by Medicare. Genea said it would offer a rebate so that the cost to the couple was reduced to zero for the fourth and fifth attempts if the first three failed. Dr Low said she got emotionally close to her patients so removing the substantial financial burden for later attempts was “great news”. Jess Richardson and her husband Joel had their first baby, Charlotte, on February 20. It was their tenth IVF attempt. Jess had two miscarriages after conceiving on the fourth and fifth attempts. She thought the reduced cost of IVF would make “a huge difference”. “It can go on and on,” she said, “and if you add the financial burden to the emotional side, it can be a reason to stop.” She said people pulled money out of their super funds to finance IVF. “This means that people will not have to do that.”
Many more couples are using IVF to try to have babies since the coronavirus epidemic forced a lockdown on the country.
Canberra fertility specialist Dr Tween Low thinks it’s because the seriousness of the crisis has made couples think hard about what is important in their lives – and having a baby has come out on top.
“With the pandemic and the time people have on their hands, the coronavirus may have helped crystallise what is important for them,” Dr Low said.
In-vitro-fertilisation was one of those procedures which was banned at the height of the lockdown.
Initially, Dr Low thought the upsurge once she was allowed to resume work was because couples feared the block would be re-imposed.
But there has been no easing of heightened demand which makes her think that couples have refocused their values towards family.
Across the country, there was a 15 per cent rise in couples seeking IVF in the two months after the procedure was allowed again compared with the same period last year, according to Genea, one of Australia’s providers of IVF and other infertility treatments.
Genea Canberra has decided to offer financial support to couples.
A cycle of IVF involves collecting eggs from the woman, fertilising the eggs in a laboratory and then inserting the embryo back into the woman.
It is a delicate and complex procedure which costs a couple about $10,000 for each cycle. Half is usually paid by Medicare.
Genea said it would offer a rebate so that the cost to the couple was reduced to zero for the fourth and fifth attempts if the first three failed.
Dr Low said she got emotionally close to her patients so removing the substantial financial burden for later attempts was “great news”.
Jess Richardson and her husband Joel had their first baby, Charlotte, on February 20. It was their tenth IVF attempt. Jess had two miscarriages after conceiving on the fourth and fifth attempts.
She thought the reduced cost of IVF would make “a huge difference”. “It can go on and on,” she said, “and if you add the financial burden to the emotional side, it can be a reason to stop.”
She said people pulled money out of their super funds to finance IVF. “This means that people will not have to do that.”
A mum has recalled her premature baby twins’ desperate fight for life during last summer’s horror bushfires.
Brooke Lye’s complicated pregnancy ended when she went into labour at 33 weeks with twins Ruby and Ash entering the world four minutes apart last November 20.
The premature babies spent their first five weeks in hospital before the family were forced were to flee home after their room was filled with smoke due to devastating bushfires over the New Year period.
They couldn’t escape the danger there either, as smoke choked every room at their home in the Queanbeyan suburb of Googong, near Canberra.
Ms Lye feared for her babies’ lives over the next five days as she placed wet towels under doors to keep the smoke out.
‘I locked myself in the smallest room in the house with the babies and an air purifier and we took terms being in there with them for five days straight,’ she told the Sunday Telegraph.
‘We couldn’t go outside, they were still getting fed by a tube and the nurses had to cancel their visits because they couldn’t drive through the smoke, it was that thick.’
NSW experienced one of its worst bushfire seasons on record in 2019-2020. The catastrophic summer claimed the lives of 33 people across Australia.
Ruby (left) and her twin brother Ash (right) had difficulties breathing when they were born
Last summer was one of the worst in Australian history, destroying an estimated 18.6 million hectares and almost 6,000 buildings – including 2,779 homes.
The lives lost included 25 in NSW, three in South Australia and five in Victoria.
Billions of animals, including native wildlife were wiped out.
Canberra recorded the worst air quality on Earth on New Year’s Day as devastating bushfires ripped through the NSW south coast and surrounding inland regions.
‘The smoke was so bad, you could literally see a haze in the hospital and I was panicking. I thought ‘they have premmie lungs, how are they going to get through this? Ms Lye said.
Bushfires had already ravaged the Queanbeyan region when Ruby and Ash arrived seven weeks early in November.
Brooke Lye went into labour with premature twins Ruby (left) and Ash (right) during the horror Black Summer bushfires in 2019-20
Ms Lye and her husband Sam were unable to touch or cuddle their precious babies during the harrowing first few weeks as they struggled to breathe on their own.
‘Ash had problems with his lungs so he couldn’t breathe at the start on his own,’ Ms Lye told WIN News this week.
‘Everything that comes naturally as a mum, it was the complete opposite. There’s nothing naturally about leaving your babies with somebody else.’
Almost a year on, Ruby and Ash are happy and healthy as they get ready to celebrate their first birthday next month.
The family went on a five kilometre walk on Sunday for the Walk for Prems fundraiser to raise vital funds for the 48,000 sick and premature babies born in Australia each year.