We are received this touching story on our main Facebook page Irish Around Oz and we hope that everyone can support Eabha! Donation links are at the end of post pinned to the top of our Facebook page at the moment.
Eabha (pronounced Ava) June Connell was born by emergency C-Section on the 28th November 2013. She was a beautiful baby and weighed 8lbs 5oz. Her pre-birth scans were normal, and at birth Eabha appeared a healthy newborn.
At 3 days old Eabha appeared quite jaundice, and a blood test showed high counts of bilirubin, and at 5 days old Eabha was suspected of having Biliary Atresia. The next 4 weeks were filled with tests, and Eabha, Emma and Thomas were in and out of the Alice Springs Hospital constantly. The decision was made to transfer them to the specialised care at the Royal Melbourne Childrens’ Hostpital (RMCH). With no family support in Alice Springs or Melbourne, Emma and Thomas made the difficult decision to relocate to Tasmania to be closer to family, and to commute whilst Eabha underwent treatment.
They spent their first Christmas together at the RMCH, and Eabha’s diagnosis of Biliary Atresia (absence of a Gall Bladder) was finally confirmed. Eabha underwent her first major surgery – the Kasai Procedure on the 8th January 2014 at just over 1 month old. The surgery took 7 hours, and initially was very successful. Over the next four weeks however, Eabha’s bile flow decreased and doctors confirmed the procedure was failing. At this rate, Eabha would need a liver transplant within 12 months to survive.
Eabha required around the clock care, having medications and formula through a nasogastric tube. Weight gain and nutrient absorption was difficult, but essential for the possibility of a liver transplant. She developed Portal Hypertension (high blood pressure in the vein leading up to the liver) which causes varices to form. These varices are bulging stretched areas of the veins which increase the risk of internal bleeding dramatically. As the blood is unable to get through the liver properly, it backs up and causes more varices, particularly in the spleen, stomach and oesophagus. She also developed Ascites, where fluid builds up in the abdomen placing pressure on organs. Due to the difficulty in absorbing nutrients, she also suffered from brittle bones, and broke her arm whilst in her crib.
Over the following 8 months Eabha was bed bound for most of the day, connected to medication machines to manage her condition. Emma stayed with Eabha and became responsible for the day-today maintenance of her food and medications. She slept on the couch in Eabha’s room during the week whilst Thomas was labouring in Tasmania to supply an income. On the weekends he would fly up to spend precious time with his family. Together they have watched Eabha go through countless Endoscopic Variceal Schlerotherapy treatments (to reduce the varices), blood tests, and scans.
In order to get Eabha to her goal weight, a Broviac Line was inserted through her chest and into her Subclavian Artery to allow nutrients to be fed directly into her blood stream – called Parenteral
Nutrition. At 8 months of age she went from 6kg to 9kg! Since then she has had to have the Broviac Line reinserted on alternate sides 3 times due to the line kinking – which is very rare. Each of these major surgeries requires chest drainage and close monitoring for any deterioration. Despite this Eabha is a happy and beautiful little girl who always has a smile and a giggle for her family, medical staff, and Cheryl (her ward grandmother).
On the 28th November 2014, family and friends flew to Melbourne from Sydney, Darwin, Tasmania and Brisbane to visit the girl who had stolen their hearts. She was allowed to leave the hospital for a few hours to celebrate with a BBQ at the Ronald McDonald House, and was spoilt rotten with toys and clothes for her 1st birthday. On the 30th November Eabha was christened at the St. Augustine’s Church, Melbourne, where she stole the show and the adoration of the congregation with her cheeky nature and gorgeous spirit.
Devastatingly, a short while after the Christening, Eabha was rushed to the Intensive Care Unit (ICU) when some of the varices in her oesophagus and stomach burst resulting in major internal bleeding. Unfortunately she also aspirated (breathed the blood into her lungs) which meant emergency surgery to bind the varices as well as being sedated and intubated to assist her breathing. This was a critical life or death situation, which resulted in Eabha being pushed to the top of the liver transplant list.
Prayers were answered when a donor liver became available and was a match. After a hugely tense 11 hours, the most incredible news parents could hope to hear came through – Eabha had survived the transplant surgery. Due to her varices bursting prior to the transplant, her journey was always going to be a rough road. She has always been a tough little cookie, and fought her way through the initial stages of recovery. Unfortunately she developed Sepsis (infection of the blood), her kidneys began to fail under the stress of the surgery on her liver, and the new liver was in shock for longer than anticipated. Doctors advised Emma and Thomas that Eabha may need to go on dialysis if her kidney function did not improve. On top of these complications, a clot was also forming on the Hepatic Vein, which could have been life threatening. Doctors had to operate on Eabha again to remove the clot and reattach the Hepatic Vein.
Recently she suffered a significant setback with both upper lobes of her lungs collapsing, sending her heart rate plummeting and causing her to have a seizure. A chest drain was inserted to help remove the pressure and reinflate them. Eabha has not yet been allowed to leave the ICU. Emma and Thomas are beside themselves with worry about Eabha’s wellbeing, and feel useless not being able to be with her for more than a few hours a day. Her immunosuppression from the transplant means that only her medical team had access to Eabha for the majority of the day to reduce the risk of infection.
At this point in time, her condition is still critical. Emma and Thomas have shown exceptional strength and courage watching their daughter go through this ordeal.
Emma and Thomas have struggled to provide the financial security required for life long medication for Eabha, the cost of daily living, and interstate flights for the family’s source of income. Funds have been raised by their family and friends in Alice Springs, Ireland and online through MyCause, however they are finding their situation increasingly difficult as Thomas has not been able to leave the RMCH for the past month. Though Emma and Thomas are fiercely proud and would ordinarily refuse to ask for help, they are appealing to the public for support at their time in need. Donations through MyCause go directly to the family, not administration, and will help them financially and emotionally deal with the enormity of their situation.
It will be a long and hard road for the Connell family, but with continued support from family, friends and the public – Eabha will come through this critical time and flourish on the other side of it. Thank you for being a part of Eabha’s Story and donating generously to this beautiful little girl and her family. You cannot imagine how much your support means to them.
Michelle Rose and Gary Smith
0422 337 270 & 0409 295 081