Ellie Gibson’s Story
April 6th 2006 I gave birth to a beautiful baby girl, Ellie Kate. My husband Wayne and I couldn’t have been happier. Wayne already had two children Bryan, 14 and Brittany, 12, but Ellie was my first child. She was perfect. Later that evening a doctor came to tell me Ellie had a heart murmur and she was going to do a few tests.
The next day during the hustle and bustle of visiting hours a paediatrician came to see us. He again explained Ellie had a heart murmur and after looking at the test results, he would like to have it checked out formally at the Royal Children’s Hospital. I started to worry a little, but I had been told a lot of people are born with murmurs and they turn out to be nothing.
When Ellie was just a week old we had our appointment at the Royal Children’s Hospital. She had test after test. There was a lot of sitting and waiting. Too much time to think about what could be wrong. The longer we waited, the more nervous Wayne and I got.
Finally, we were seen by a cardiologist, Dr. Lane and my worst fears were realized. Ellie was diagnosed with Tetralogy of Fallot. The next thing I remember is Dr. Lane saying `Ellie would need open heart surgery between 6-12months of age’. After that everything was a blur. All the information went in one ear and out the other. Wayne and I were devastated to say the least.
We then had the hard part of telling family and friends. Each time we told the story it was harder and there were more tears. Here I was a first time Mum dealing with all the things that a first time mum should, nappies, breastfeeding and sleep deprivation. All the while asking `why me’, `why us’, `why Ellie?’ I questioned everything. Wayne already had two healthy children. `What was wrong with me?’ `What had I done wrong?’
The next few months were filled with doctor’s appointments. We learnt more about the condition each appointment. We were warned Ellie may have `blue episodes.’ This was more likely to happen if Ellie got upset. Needless to say we tried our hardest not to let her get upset. Some would say she was even spoilt!
Despite her condition, Ellie was very healthy. She kept putting on weight and developed normally. Some days we even forgot there was anything wrong at all. Then after seeing the surgeon, Dr D’Udekem, Ellie’s surgery was booked in for the 6th October, 2006. She would be exactly 6months old.
We were lucky Ellie only ever had one blue episode and that was her pre-admission day. At least we were in the right place when it happened. Wayne and I were amazingly calm about the whole thing, I think because we had been preparing for it for about 3months.
October 6th arrived quickly and what a day. We were at the Royal Children’s Hospital by 6.30am. First to pre-admission, then to see the anaesthetist, then around to theatre. What a whirlwind. I was able to hold my baby girl while the doctors put her to sleep and give her one final kiss before they whisked her off for surgery. Letting go was the hardest thing I have ever had to do.
Following good advice, we left the hospital for the day. After a very long 6 hour wait, Wayne and I got the call to say the operation was finished and all had gone well. We met Ellie in Intensive Care. She was attached to every machine possible. Despite having a tour around ICU just days earlier it didn’t quite prepare us for seeing our little girl hooked up to all those machines. Thankfully the staff were fantastic and so reassuring.
Ellie’s recovery was not all smooth sailing. She had a few minor complications in Intensive Care – low urine output, low blood pressure. The first 24 hours were the worst. But after two days she was transferred to 7 West with a few less tubes. We even had our first cuddle after 48 hours. Days later she still wasn’t feeding well and was quite agitated. On Tuesday 10th October an ECHO showed Ellie had fluid around her heart and lungs and she was rushed back to surgery for a second time that week.
Thankfully, after this operation Ellie recovered in leaps and bounds. On Saturday 14th October, after nine long days at the Royal Children’s Hospital, we were able to take Ellie home. She still had a long recovery ahead, but at least we were at home to do it.
Eighteen months later, Ellie is now a very healthy young girl – thanks to the wonderful team of nurses and doctors at the Royal Children’s Hospital. With the support of HeartKids and our family and friends I am still sane.
We know there is still a long road ahead with regular checkups and there is no guarantee she won’t need surgery in the future, but for now we are just grateful we have a very happy, healthy, beautiful girl and enjoy watching her grow.
Story by Libby Gibson – Ellie’s Mum
February 2008