Through the great work of each of the children’s hospitals in Australia, and critical equipment donated by the Huggies® Hugs for Healing initiative, many sick babies and toddlers have been healed and are back to their happy smiling selves. Rollover the balloons below to read stories from each of the hospitals.
Nathaniel was born prematurely at 29 weeks weighing just 1.24kgs and needed highly specialised care in the Neonatal Intensive Care Unit including treatment for reflux, jaundice and a blood transfusion. The oxygen levels in his blood and heart rate fluctuated hourly and he needed ongoing help to breathe including oxygen throughout his hospital stay, which according to his mum Cara, left her and Nate's dad on the 'edge of their seat' every day.
In October 2013, at 35 weeks old, Nathaniel was well enough to be transferred to the hospital's Special Care Baby Unit (SCBU). After six weeks of interacting with their baby through the small access openings in his incubator, Nathaniel graduated to an open bassinet donated by the Huggies® Hugs for Healing initiative . While still attached to the monitoring equipment and oxygen needed to keep his health stable, his parents could finally cuddle and care for him without restriction.
"In his bassinet, it was easier to read to him, hold his hand, look into his eyes and talk to him," says Cara. "I forgot all about the cords and monitors and could really enjoy the close connection I felt we had missed out on in the first few weeks after his birth."
Nathaniel's parents were delighted when he was able to come home on 30 October 2013.
Nathaniel is now home, aged 8 months (or 5.5 months - age corrected) and weighs a healthy 7.5 kg. He is a happy, cheeky bub who is passing all his developmental checks with flying colours.
Cara says she is very grateful for the highly specialised care and latest equipment provided at Adelaide's Women's and Children's Hospital – the only hospital in South Australia, dedicated to the care of children.
Three and a half month old Carter is a gorgeous little boy who rarely cries, until one day he started to whimper, which quickly turned into a high pitched scream. When his parents couldn't soothe him, they rushed him to their local Emergency Department. Carter was diagnosed with Group B Streptococcus, a blood-borne infection which can be extremely serious for babies.
As a result of the diagnosis, Carter was transferred to Sydney Children's Hospital, Randwick, where he was admitted for specialist infant care. He needed intravenous antibiotics which would be delivered through a line in his neck, and this procedure was performed at Randwick.
The condition normally affects newborns, but is quite unusual in babies over three months, and can sometimes develop into meningitis.
He and his parents spent ten days at the Baby and Toddlers Ward while Carter was receiving treatment, and he was soon back to his old smiling self.
His parents have high praise for everyone at SCH. According to mum Lauren, "The staff were great, and Carter was a hit with the nurses!"
When Melinda, Molly’s mum, was 20 weeks pregnant, her scan showed that Molly had a big bladder. This could’ve meant a number of things, from a small blockage leading from the bladder, to a more serious syndrome (MMIH) where a child’s intestines, bladder and colon do not contract and release to allow food to travel past the stomach and out of the body.
Molly’s bladder was drained in-utero, at a Brisbane hospital.
Two weeks prior to the birth, Melinda had 3.2 litres of extra amniotic fluid drained from her abdomen. Extra fluid is a side effect of MMIH in the baby.
Molly was born naturally at Maternal Fetal Medicine - Centre for Advanced Prenatal Care the Royal Brisbane and Women’s Hospital at 34 weeks.
Soon afterwards, at the Neonatal Intensive Care Unit, Molly was placed into the BabyTherm Infant Warming system, where she stayed for approximately two weeks.
Molly was then transferred to The Royal Children’s Hospital for surgery. After surgery, Molly was a regular in the Drager BabyTherm Infant Warming system, and then again for a further two weeks when she was moved to Surf Ward.
Molly moved then to Robertson Ward, and, after reacting to a line change, was transferred to the High Dependency Unit for three days. There, she again used the warming system.
"The system is great because it keeps her warm as she is so tiny," says Melinda. "It’s also easy to manage, can be adjusted which is good for a tall person like me, and is mobile."
Helen Proctor, Nurse Unit Manager for Robertson Ward, is delighted that the ward now has its own warming system. "It expedites care to the baby and its phototherapy lights and heater provide the warmth the baby needs. It also enables good access to and viewing of, the baby."
Melinda and Molly will be in the RCH for many months to come. Molly is currently being looked after by four teams – general paediatrics, surgical, renal and gastroenterology.
While being told her pregnancy was deemed high risk after her 12 week scan was a shock, Leana and her husband Kyle knew that remaining calm and centred would give their unborn child, Evelyn, the best possible chance.
Leana’s 12 week scan showed that Evelyn had gastroschisis, a condition which caused her intestines to protrude through a hole in her umbilical cord. Their GP broke the news and referred the couple to King Edward Memorial Hospital which specialises in high risk pregnancies.
Over the next few weeks, Leana and Kyle learnt all they could about Evelyn’s condition. Many of the statistics they were given were so frightening that they choose not to share them with others.
“Kyle and I were always very calm about Evelyn's condition, we stayed level headed throughout most of the pregnancy and that kept the majority of our family the same way. We told family what they needed to know and kept a lot of the statistics and more concerning information to ourselves. We found that having a calm support network made our situation much easier and allowed us focus entirely on the pregnancy and our baby,” explained Leana.
Leana and Kyle’s first meeting with the PMH Neonatal Team was at the six month mark of their pregnancy. The team took time to explain what Evelyn’s condition meant, the risks associated with it and how they proposed to treat it. They also answered the myriad of questions the couple had.
Knowing that Evelyn would be undergoing surgery to correct her condition within hours of being born was a daunting prospect.
“Fear was our overarching emotion at the time,” recalls Leana.
“Fear of the unknown caused our minds to go blank. We couldn’t think straight or speak. We just sat and waited quietly for Evelyn to come out of surgery and to be told she was going to be ok.”
Thankfully the surgery went well. Evelyn was settled into the Neonatal Intensive Care Unit (NICU) for monitoring and post-surgery treatment. She spent the first eight weeks of her life on the Unit. During her time in NICU Evelyn was placed in a Giraffe Warmer so her temperature could be kept stable and she could be closely observed, X-rayed and weighed without having to be disturbed.
“NICU was an emotional rollercoaster. We would be so excited to see Evelyn each day, but we were also terrified of what might have happened while we were gone.
Quite a few times we would arrive at the hospital to be told that she had become extremely unwell over night so had been moved back to the high care area or have a new machine attached to her tiny body to help her fight through things.
“Eventually we learnt to take each day one at a time, not to expect too much, and to simply listen and learn as much as we possibly could. Having a child in NICU doesn’t make it easy to think of the future or reflect as every ounce of energy, whether emotional, physical or mental, is focused on your child getting through the day.
“The whole experience is almost indescribable. It was exhausting, more than you could possibly imagine. PMH is wonderful and NICU team in particular are amazing. Every person we came in contact with was so caring and understanding. We were always impressed with the way they responded to every situation and constantly made us feel like Evelyn was their only patient. We are so lucky to have a wonderful place like PMH to care for our children. PMH staff are fantastic at what they do; we owe them so much.”
Since being discharged from NICU, Evelyn has gone from strength to strength. She will continue to have an annual review for the next few years, but otherwise Evelyn is a happy, healthy child.
Leana once again explains.
“It’s incredible to us that the drama of her first few months of life is all in the past. Today Evelyn in doing beautifully. She doesn’t have a belly button, so that’s a reminder of all she has been through. She also has a few small scars which shows just how strong our little miracle child is.”
Evelyn happily celebrated her first birthday on 21 January. She enjoys drawing, reading books and playing with her ukulele, or anything that is noisy! She is fascinated by other children, especially babies, and is daddy’s girl through and through. She loves ANY activity that involves her dad or that daddy does.
Belinda and Dave were terrified as they kissed their beautiful one-day-old baby daughter when she was wheeled into theatre for life-saving surgery.
Amber was born with Tracheo-Oesophageal Fistula (TOF) a rare congenital condition of the oesophagus (food pipe) that affects one in every 3,500 babies. In Amber's case the oesophagus was not joined to her stomach so she was unable to swallow.
Belinda explains; "It all happened so fast. We knew that Amber had TOF as it was picked up during my pregnancy; however it was still such a shock to have our tiny, precious baby taken into theatre just hours after her birth. "
In addition to TOF, Amber was diagnosed with Patent Ductus Arteriosus (PDA), a condition that causes abnormal blood flow between two of the major arteries connected to the heart - the aorta and the pulmonary artery. Before birth, these arteries are connected by a blood vessel called the ductus arteriosus, a vital part of fetal blood circulation. Normally within minutes or up to a few days after birth, the ductus arteriosus closes. In Amber's case, however, it remained open placing strain her heart and increasing blood pressure in her lung arteries. She was only 11-months-old when she underwent heart surgery to correct the problem.
On top of TOF and PDA, a standard new born hearing screening test showed that Amber had profound hearing loss. She received her first hearing aids when she was four months old and in late 2011, was fitted with a cochlear implant, an electronic medical device that replaces the function of her damaged inner ear.
During her first year of life, Amber was admitted to PMH over 20 times. As well as constant reflux and feeding problems, she suffered from severe bronchitis, an acute inflammation of the air passages within the lungs. The stress on her tiny body was immense. At just five-months-old, Amber went into cardiac-arrest whilst in ICU.
Throughout all of this, Belinda and Dave were caring for their two older daughters – Mikayla and Faith who were only seven and four when Amber was born. Then when Amber was three months old, Belinda discovered she was pregnant with their fourth child.
"It was an incredibly difficult, stressful time," explains Belinda.
"Both Dave and I had to learn about all of Amber's conditions so quickly. We had two healthy children and were totally unprepared for everything that happened when Amber was first born. Thankfully the staff at PMH have been amazing. They gave as much information as we could handle about Amber's condition in the early days and have been with us every step of the way to support us and answer the hundreds of questions we keep asking. Over the years we have made countless visits to PMH so have got to know quite a few of the doctors, nurses and admin staff really well that many feel like our extended family."
Being pregnant with Hunter, Belinda and Dave's son who is now three, added a whole other layer of complexity to life. Amber's reflux was so bad that at times she was vomiting after every feed and several times throughout the night. A constant store of blankets was kept beside her bed so she could be cleaned up and given new bedding after each incident.
Dealing with sleepless nights while pregnant and keeping life as normal as possible for her two older children is a testament to Belinda's strength.
"It was definitely hard, but we really had no other choice. Both Dave and I just had to keep going. We supported one another and have grown stronger as a couple and a family with all that we have been through."
Amber's first Christmas was spent in PMH's Paediatric ICU with severe bronchitis. Belinda, 26 weeks pregnant at the time, was at Amber's bedside when her contractions began. The PMH nursing staff rallied around Belinda arranging a quick transfer to King Edward Memorial Hospital. Dave spent a very nervous five days rushing between his daughters at home, his baby in PMH and his wife and unborn child in KEMH. Thankfully Belinda's labour was able to be stopped and Hunter went through to 34 weeks.
Amber's condition was a mystery for Belinda as although she was well aware Amber had TOF, and knew everything about what was involved with this, it did not explain the other issues Amber had, including her hearing loss.
But this all changed when Amber underwent a CT scan that discovered she did not have a vestibular system, which is responsible for balance and coordination. This meant that Amber should not be able to walk. For doctors and Belinda, this was the final piece of the puzzle because as a result Amber was diagnosed with CHARGE syndrome.
CHARGE syndrome is a chromosomal mutation that effects one in 10,000 babies. The complex syndrome involves extensive medical and physical difficulties that differ for each child. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems, just like Amber.
‘It is a miracle Amber is walking. In a way I am pleased that we didn't know she shouldn't be walking as we would not have pushed her as much, which might have meant a different outcome," says Belinda.
While there is no cure for CHARGE syndrome, now that Belinda knows exactly why Amber has so many issues she feels more comfortable.
Despite the difficulties Amber's conditions have meant for the young family, Belinda and Dave are incredibly positive and pleased that their four beautiful children are just like any other siblings that play, tease and fight with one another.
Belinda explains how having younger siblings dealing with so many serious health issues has made Mikayla, now aged 11, and Faith, eight, incredibly caring and compassionate.
"Most kids cringe at the sight of vomit, but the girls just deal with it, helping to clean Amber up when she needs it so they can get back to playing or doing whatever they were up to. Both Dave and I are so lucky to have such amazing children."
While Amber requires on-going treatment involving countless more visits to PMH and faces several further surgeries to deal with her conditions, she is a bright, happy five year old who loves hot cross buns.