When mum, Reneya discovered she was pregnant with twin girls, her and partner David were overjoyed with the news, unfortunately from 17 weeks, things started to spiral.
It was discovered Reneya’s cervix was giving way.
Reneya was told she would need to leave her home in Lock and stay in Adelaide, on bed rest (to be close to the Women’s and Children’s Hospital) until she gave birth. This was incredibly scary and unsettling for the family as they immediately had to make a decision around work commitments and make arrangements for their 5yr old son, Bailey. This is when they discovered Ronald McDonald House SA.
The family stayed in Adelaide until Reneya gave birth prematurely at 33 weeks to two beautiful twin girls, Stella and Maisey who weighed just 1.8 and 1.6kg each. Whilst the babies had to stay in the hospital for monitoring, Reneya and David were grateful to stay within walking distance at Ronald McDonald House SA.
The first few weeks for Stella and Maisey were filled with the typical cycle of around the clock feeding, interrupted sleep for the parents and lots of newborn cuddles. It was only 5 weeks in, whilst the family were still at the hospital monitoring the prem babies that something terrifying happened – Stella went into respiratory arrest. Stella was immediately admitted to the Neonatal Intensive Care Unit (NICU).
The same week whilst in hospital, Reneya saw that Maisey had stopped breathing in her bassinet and notified a nurse immediately as she had also gone into respiratory arrest. Both girls were kept in NICU for monitoring, which was extremely scary and upsetting for Reneya and David.
As the weeks progressed, Stella and Maisey’s respiratory arrest episodes began to slow down so they were discharged from the hospital at 3 months old and the family were finally able to all stay together at Ronald McDonald House. The joy was short lived however, when the following morning, Reneya noticed Maisey had turned blue and had stopped breathing. Reneya immediately hit the emergency button inside their bedroom at the House and began CPR before running to the hospital. Reneya ran through traffic lights with Maisey in her arms until she got to the A&E of the Women’s and Children’s Hospital where Maisey was able to be revived.
The doctors told Reneya and David they needed to prepare themselves to be in Adelaide for a long time while they tried to figure out what was wrong with the girls and they wouldn’t be heading back home anytime soon.
The parents requested genetic testing of the girls to see what was causing these terrifying episodes and soon, a rare condition called ‘Congenital Myasthenic Syndrome’ (CMS) was diagnosed. CMS is a diverse group of disorders that have an underlying defect in the transmission of signals from nerve cells to muscles. The disorder is worsened by exertion, which in Maisey and Stella’s case, meant any time they cried too much, laughed too much or exerted themselves, it could bring on respiratory arrest.
Learning this outcome was incredibly difficult for Reneya and David, as was navigating how to keep both girls calm when they were just a few months old. “If they cry too much or laugh too much, they’ll stop breathing. A nappy change can cause a respiratory arrest. It can be quite terrifying.” said Reneya.
Since learning of Stella and Maisey’s diagnosis, the family have been required to relocate to Port Lincoln, when the twins were finally discharged at 7 months of age. The family return regularly to the Women’s and Children’s Hospital to ensure the girls’ are monitored and are on the appropriate levels of medication. Every visit to Adelaide, Reneya, David, Bailey, Maisey and Stella are welcomed back to Ronald McDonald House SA which provides them comfort. As Reneya shared, “When we come back to Ronald McDonald House, we always have the same feeling that we’re home again. It’s always good to see the team and share updates about how Maisey and Stella are progressing. We’ve met some incredible families and love being at the House.”
The twins are now almost 3 years old and whilst both parents feel like they’re still navigating their way through the condition, they say the biggest milestone will be when the girls learn how to self-regulate and calm themselves before an episode comes on. To date, Maisey has had 20 respiratory arrests which is terrifying for everyone involved.
The family will be required to visit Adelaide regularly for the future, but feel reassured that they’ll have one less thing to worry about when it comes to accommodation. “We don’t know what we’d do without being able to stay at the House and to be so close to the hospital if something happens to the girls – we are so grateful for Ronald McDonald House.”
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Staying at the House
Our Adelaide House gives seriously ill children the best gift of all – their families. Our warm and supportive home-away-from-home provides both the whole family with a comfortable place to stay and peace of mind, knowing they can stay together and close to the Women’s and Children’s Hospital.
Ronald McDonald House is located a convenient 5 minute walk from the Women's and Children’s Hospital on Melbourne Street. Centrally located in leafy North Adelaide in the ‘green belt’ of the city, our House is surrounded by acres of urban parkland and is a short stroll to the Botanical Gardens and the Adelaide Zoo.
Ronald McDonald House Adelaide is spread across two sites directly opposite each other. The main House sleeps up to ten families in single room accommodation. Our second building is an apartment-style facility containing ten two - bedroom self-contained units, best suited to families staying with us for longer periods of time.
Who is eligible to stay with us?
Keeping the family together can be extremely tough without support, which is why we offer accommodation for parents and families with seriously ill children. Our House also supports mothers going through high risk pregnancies.
We try to accommodate the needs of families where we can, but this is always subject to availability. Priority is given to regional families whose children have been recently diagnosed, seriously injured or who require emergency treatment, as well as families of premature babies.
To stay with us the first time, you’ll need an initial referral from your local doctor, specialist, social worker or patient travel office. For subsequent visits, you can enquire with us directly.
Click here to see more information about staying at the House.
Ronald McDonald House South Australia relies on the work of our volunteers and the financial support of individual and corporate donations.
Without their generous contributions, we would be unable to keep our doors open to families in need 365 days a year. Thanks to the public, we’ve been able to continually expand our operations to help more families and communities in Adelaide.
There are many ways you can contribute to Ronald McDonald House South Australia:
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