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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