An update from Emma and Tom - 17/03/2015 *Saint Patricks Day in Australia*
Well……………….It has been a long time in between updates, and only to blame is myself but as you can imagine with so much going on it is the last thing on your mind to think to update a page, however many times I thought about it, it just never seemed to be the time.
This brings me to now, the perfect time to update! :)
After Eabha had a major variceal bleed in early January she was placed in ICU after emergency surgery. It's hard to even think back at how bad she was but things were bad, very bad and our little girl was only hanging on. She is absolutely amazing though and kept fighting, with only days to live we were blessed to be given the news that Eabha was to receive her gift of life of a new liver! I
We were gobsmacked, hesitant to become too excited, but nearly jumping out of our skin with the news that we'd been waiting to hear of for nearly 8 months. It's hard to describe the feelings you have of elation at the thought of a new life for your child or the sheer terror at one of the biggest operations of her life. The thought of having to say goodbye to your little girl not knowing if you will be able to kiss her little cheek or hear her cry again is indescribable. You have to stay positive as they say.
After 12 long hours we had the best news, that I'm sure Thomas will agree with me on this one, that we will probably ever hear in our lives, that our little fighter was still with us and that the operation was complete and all had gone smoothly. It took 3 hours to remove Eabhas sick liver, the amount of blood vessels from the portal hypertension and the amount of scarring and hardening made it extremely difficult. We owe everything we have to our amazing surgeons and a HUGE and extremely warm thankyou to Bob Jones the head of the transplant team who undertook the huge operation on Eabha. We put our daughters life knowing they were in the best hands possible and you didn't let us down.
After such an extremely complex and long operation Eabha was still in an extremely fragile state and was placed in ICU. Because of her deterioration before going into the transplant the following month after was the hardest time of our lives! Eabha was nearly taken from us on more then one occasion. She went through blood sepsis and twice went into septic shock, collapsed lungs, fungal infections, kidney failure, bronchitis, several pleural effusions and a pneumothorax. To put it all into words seems so easy but to see for yourself is an experience I never wish upon anyone. We are truly amazed at how our beautiful amazingly strong girl has pushed through all odds and has come out on the other side with an extremely cheeky smile on her now WHITE little cheekies!! :D
We are far from out of the woods as yet, as her new liver is being a bit slow to kick start, and unfortunately Eabha has had some quite significant rejection only in the last few weeks. We are still in early days of making sure she's heading in the right direction again. Eabha is having weekly blood tests and is due to fly back to Melbourne in 3 weeks, hopefully not sooner pending positive blood tests which we are having on Friday. We will only be in Melbourne for check-ups at this stage, and as you can imagine I know speaking for myself after living at the hospital since May 2014 that I sure don't want to be there for too long on our visits!
An update from Emma
Hi everyone, sorry we haven't given an update on Eabha but every time time i think it's a good time to write one something happens and she takes a step back in recovery. So much is happening it's too much to explain, just know she is fighting her little butt off! Please keep praying for our wee baby girl she needs everything we've got!
This is hard enough to write let alone ask of people but Thomas and I are struggling and if anybody could lend a helping hand to support our family all being together we would honestly be at your mercy. Any donations help, as have the donations that have already been kindly donated by you all! As you can imagine a year of flying every week and other costs involved haven't taken too kindly to our situation. This has broken me to ask for help, but as Eabha isn't recovering as we'd hoped Thomas needs to be here for her and myself and even him.
Thank you again if anybody can help
Eabha (pronounced Ava) June Connell was born on the 28th November 2013 by emergency C-section. She was a beautiful baby and weighed 8 lbs. 5 oz. Eabha’s pre-birth scans presented normal and at birth Eabha appeared to be very healthy new born. At 3 days old Eabha appeared quite jaundice, a blood test showed high conjugated bilirubin and an ultra sound showed no gall bladder. At 5 days old Eabha was diagnosed with a suspected case of Biliary Atresia. Eabha spent the first 4 weeks of her life in and out of the Alice Springs Hospital whilst Doctors tried to diagnose and treat her symptoms. At 4 weeks of age, Alice Springs Doctors made the decision to transfer Eabha to the Royal Melbourne Children’s Hospital. With no family support in Alice Springs, Eabha’s parents Emma and Tom made the difficult decision to leave their lives and work in Alice Springs and relocate to Tasmania in order to be closer to better health care and family. Emma, Tom and Eabha spent their first Christmas together meeting with Doctors at the Royal Melbourne Children’s Hospital, and after many tests and a liver biopsy Eabha’s suspected diagnosis of biliary atresia was confirmed. At 6 weeks of age Eabha underwent a procedure called the Kasai procedure, the surgery took 7 hours. The surgery appeared to be very successful, at first. Doctors were happy with her post surgery recovery and Eabha was able to return home to recover fully. However, after the first few weeks, the bile flow decreased and Doctors soon confirmed that the procedure had stopped working, this can happen in some cases and unfortunately Doctors are unable to explain why. If the Kasai procedure is not successful, infants usually need a liver transplant within 1 to 2 years; at this stage Doctors were predicting that Eabha would require a transplant within the next 12 months. Eabha currently requires around the clock care, with various medications throughout the day and feeding via a nasogastric tube. A common symptom of Biliary Atresia is slow weight gain and growth and over the last few months the focus has been on increasing Eabha’s weight in order to best prepare her for her major surgery/transplant. This hasn’t been without its troubles and Emma, Tom and Eabha have spent many a day/night in the Royal Hobart Hospital’s Paediatric ward. Problems with liver function can cause fluid to build up in the abdomen, called ascites. Unfortunately Eabha is currently suffering from this condition and has spent the last 3 weeks in Hospital. Doctors are currently in the process of organising to transfer Eabha to the Royal Melbourne Children’s Hospital with the possibility of Eabha requiring a transplant sooner than expected.
Looking after a new born is never easy; looking after a sick one is even harder. But I’ve never once heard Emma or Tom complain, even after many a sleepness night on hospital chairs. Having a sick child is not only emotionally stressful but can also be financially stressful on the family. In launching this page I am hoping to relieve some of that financial stress and hopefully enable Emma and Tom to not only support Eabha but also each other during this time.
Any funds raised via this page will go directly towards supporting Emma, Tom and Eabha during this difficult time.
For further information regarding Biliary Atresia and the Kasai procedure please see below.
What is biliary atresia?
Biliary atresia is a life-threatening condition in infants in which the bile ducts inside or outside the liver do not have normal openings.
Bile ducts in the liver, also called hepatic ducts, are tubes that carry bile from the liver to the gallbladder for storage and to the small intestine for use in digestion. Bile is a fluid made by the liver that serves two main functions: carrying toxins and waste products out of the body and helping the body digest fats and absorb the fat-soluble vitamins A, D, E, and K.
With biliary atresia, bile becomes trapped, builds up, and damages the liver. The damage leads to scarring, loss of liver tissue, and cirrhosis. Cirrhosis is a chronic, or long lasting, liver condition caused by scar tissue and cell damage that makes it hard for the liver to remove toxins from the blood. These toxins build up in the blood and the liver slowly deteriorates and malfunctions. Without treatment, the liver eventually fails and the infant needs a liver transplant to stay alive
How is biliary atresia treated?
Biliary atresia is treated with surgery, called the Kasai procedure, or a liver transplant.
The Kasai procedure, named after the surgeon who invented the operation, is usually the first treatment for biliary atresia. During a Kasai procedure, the pediatric surgeon removes the infant’s damaged bile ducts and brings up a loop of intestine to replace them. As a result, bile flows straight to the small intestine.
While this operation doesn’t cure biliary atresia, it can restore bile flow and correct many problems caused by biliary atresia. Without surgery, infants with biliary atresia are unlikely to live past age 2. This procedure is most effective in infants younger than 3 months old, because they usually haven’t yet developed permanent liver damage. Some infants with biliary atresia who undergo a successful Kasai procedure regain good health and no longer have jaundice or major liver problems.
If the Kasai procedure is not successful, infants usually need a liver transplant within 1 to 2 years. Even after a successful surgery, most infants with biliary atresia slowly develop cirrhosis over the years and require a liver transplant by adulthood.