Meet Our Perth NurtureGroup Coordinators
Claire (and Sophie)
I'm Claire, mum to Sophie, who at the time of writing this is a very busy two-and-a-bit-year-old toddler.
We started our Miracle Babies journey after Sophie was born very ill in November 2008. She was four days overdue when I realised she was no longer moving, and rushed to the hospital. She was born via emergency caesarian, and was found to have her umbilical cord wrapped six times around her legs, cutting off her oxygen supply.
The lack of oxygen had caused a brain injury called hypoxic ischemic encephalopathy (HIE), and she was flown by Royal Flying Doctors Service from her birthplace of Albany to Princess Margaret Hospital to undergo a revolutionary cooling treatment that saw her core body temperature lowered to 34 degrees for three days. An MRI scan showed extensive damage to most of her brain, and we were told to prepare ourselves for probable future outcomes including developmental delays, epilepsy and cerebral palsy.
We spent 19 days in Ward 6B at PMH, and a further 7 on the general ward in Albany before going home. We spent her whole first year of life worrying ourselves senseless as we waited to see what the long-term impacts of her birth would be.
Despite some early delays in gross motor and communication skills, with the help of various therapies and specialists and a lot of hard work from all of us, Sophie has been able to overcome her rough start to be ahead in every developmental area and free of any long-term concerns. She has recently been discharged from monitoring and therapy and is as happy and healthy as they come.
Our luck with Sophie's outcome has given us a strong understanding of what it's like to be NICU parents during and beyond those stressful first days, and at the same time has allowed us to turn our energy toward helping others. We've been writing a blog about her recovery since she was six weeks old, and we are also involved in creating a foundation for research into future treatments for HIE.
And now that Miracle Babies has come to WA, we're delighted to be able to give support to other families by helping to coordinate the NurtureGroup with Amy and Eloise.
We look forward to seeing you and your amazing Miracle Babies at the NurtureGroup sessions this year. Sophie's just finished helping me unpack all the toys for the group, and you have her assurance that it's going to be a mountain of fun.
See Sophie's Miracle Babies story here and her blog here
Eloise (and Charlie)
Our beautiful little man, Charles William Thomas (Charlie) was born on 14th July, 2008 via emergency caesarian at St John of God in Subiaco.
I had many difficulties during the pregnancy with severe pre-eclampsia and significant polyhydramnios (excessive amniotic fluid), which indicated that our little one had a 'blockage' and was unable to swallow. When Charlie was born, he had a condition known as TOF (Tracheo Oesophageal Fistula), where his trachea and oesophegus were joined and both led to his lungs and he could not swallow. Within hours he was rushed to PMH for emergency surgery to correct the fistula.
After a few heartbreaking days, I was taken to PMH to visit him for the first time and hold my little boys hand for the first time. We spent an awful amount of time at PMH and got to know the parents living quarters quite well.
Over Charlie's first year, we had eight hospital stays after his death spells. If he cried....ate....drank...(did all of the things that babies do!) his trachea would collapse and he would stop breathing. Hence the mad rush to the hospital. We had an oxygen machine at home and a couple of first aid techniques that we could put into practise once he had a spell, but it never made them less frightening.
Over the years, his trachea has grown stronger and he is aware of his capabilities. He hasn't had a spell for six months now and he is two and a half. He can eat 'normal' food (always with supervision) and he is a very happy and healthy little boy. Things can only get better for him now and by the time he is four or five, he will no longer have ongoing issues with his TOF. He does have a speech delay, a sub mucus cleft palate and a double uvula also and a 'TOF Cough' (when he does lots of physical activity, he honks like a goose), but none of these things will affect him as he grows up stronger and more gorgeous by the day.
We are also really excited about being part of this wonderful nurture group and look forward to meeting all of the new parents and their miracle babies.
Amy (and Lachlan)
Hi my name is Amy and I am the proud mother of Lachlan, who is 14 months old, 11 months corrected age and Finnigan (Dec.).
We started our Miracle Babies journey when I went into labour at 23 weeks with my twin boys, when on holidays down at Busselton. I was rushed up to KEMH where they tried to stop my labour but unfortunately no drugs could stop Lachlan and Finnigan from their very early arrival. Finnigan and Lachlan were born on the 21st Dec 2009, weighing 650 and 750 grams. Both boys were seemingly doing well but anyone who has had a baby in the NICU would be aware how things can change so quickly. Finnigan passed away on the 23rd December, 2 days old. His little lungs could not handle the pressures anymore and we had to make that heart breaking decision to let him go.
Lachlan spent 55 days in the NICU, with 39 days being intubated. He spent another 50 days on continuous positive airway pressure (CPAP) and remainder of his time in hospital on oxygen. In total Lachlan spent 129 days in hospital before we could take our 3.5kg baby home on the 29th April 2010.
Lachlan came home on oxygen for about 3 months due to his Chronic Lungs disease. He has now been given the all clear from the Respiratory Clinic and only visits for check ups every 6 months. Whilst in hospital he had 4 blood transfusions, got one infection which the doctors had never seen in the hospital before, was treated for his PDA and had mild retinopathy of prematurity (ROP) in one of his eyes.
Our time in the NICU has seen both the worst and best outcomes, we are aware of just how much of a ‘roller coaster ride’ this journey is in having a premature baby and life in the NICU and SCN.
We were told to expect the worst and the severity of his prematurity could have some drastic long term affects. However, Lachlan's developmental progress is pretty much on par with his corrected age and he has only mild speech delays. His doctors are surprised with how well he is doing. Today he is a happy and very inquisitive little boy.
Lachlan and I are proud to help to coordinate Perth’s NurtureGroup with Claire and Sophie and Eloise and Charlie, and look forward to meeting the other babies and their parents.