~Our Story~

In The Beginning

When we first found out I was pregnant it was such a surprise, a lovely one.  I thought something was up so off to the chemist for a test.  I did two positive tests and one at the doctor the next morning before I believed it.  This was Sunday 22nd September.  I was exactly 3.5 weeks pregnant.  Well we told the world, I know you are supposed to wait but sheesh we were having a baby. 

It was all very exciting.  I had to wait until 10 weeks to go to the hospital for my first visit and I think I booked that the day after I found out.  It was not until November which felt like a lifetime away!!  I was quite nauseous from 5 weeks onwards but did not suffer too much from actual vomiting morning sickness this lasted until 16 weeks.

Jacqui & Andrew (12weeks pregnant)

My first visit at the hospital went great and we were planning to do share care.  We were offered the nuchal translucency scan at 12 weeks which we accepted more to see the baby than to find out if anything was wrong.  Ironic huh.  Well off we went on Friday 22nd November and had this first scan.  Our baby, we saw it for the first time, brings tears to your eyes when the sonographer points out, here is the little one here.  We left with about five ultrasound piccies and off to Bundaberg for the weekend as we had our high school reunion the next night.  We proudly showed off our ultrasound photos to family and friends and were so excited.  Our next scan would be booked for 6th January 2003.

We spent Christmas in Bundaberg and I remember on Christmas morning feeling the baby move for the first time ever.  Very special. 

Discovering HLHS

Our journey with hypoplastic left heart syndrome began on 6th January 2003 with a routine visit to the hospital for our 19 week scan.  The sonographer was not happy with the picture of the heart and went to get a doctor who confirmed that there was a problem.  We were then taken to a room and told that our baby had HLHS and drew some diagrams to explain. Then we were given our three options, compassionate care, termination or surgery. It was not until the word termination was used as one of the options that we realised how serious this was. Of course our heads were spinning.

Everything happened quite quickly after that, we had an appointment made to see Dr Chris Whight at Prince Charles Hospital, Brisbane on 9th January.  When we saw Dr Whight on the Thursday he was so positive and informative that we decided to go ahead and give our baby a fighting chance.  We saw him again on the 20th of May and we had every confidence that we had made the right decision.

We had many ultrasounds along the way to check the baby’s growth which was right on track.  Our baby was entering the world by Caesarean section on Tuesday 27th of May at Royal Women's Hospital Brisbane and then our baby would be transferred around one week later to Prince Charles Hospital for surgery.

While it was devastating to find out the diagnosis, we were very grateful to have known in advance as it gave us the opportunity to do lots of research and be prepared, however prepared you could be for something like this.  We were also happy that we were in close proximity to the facilities at Prince Charles Hospital in Brisbane.  We also made many friends via the internet that shared their wealth of knowledge with us during this time.

Jacqui - ready to burst!

Tuesday 27th May

After a very nervous morning we got to the hospital at 7am and did all of our admission, we were booked for 9am but there was a hold up in theatre so we sat and watched Bert Newton in our lovely hospital clothes.  I had two ultrasounds to check that the baby was still breech, if it had turned I was to be induced and have natural birth.   I was given my epidural about 10.30am (which did not hurt at all and that had been what I was most scared of!) And into theatre we went.  It did not seem long at all and at 10.49am we met our beautiful Georgia.  I did not even know they had started. I think my jaw nearly hit the floor when we were told we had a girl.  I had been so positive that we were having a boy that I had lay-buyed some cute little boys outfits a few weeks before at Target.   The theatre staff asked what we were going to call her and through my tears I said we want to call her “Georgia Kate”.  My tears were that of excitement and relief that our baby was pink!  They said she pinked up beautifully when she came out and she looked good weighing 6lb 9oz.  I couldn’t believe we had a girl and had to ask Andrew again “what have we got?”  Georgia was wrapped in a blanket and they placed her on my chest where we had a family photo and then she went to ICU.  When I left theatre and went to post op, Andrew went and changed back into his normal clothes and went and spoke to our anxiously waiting parents and brothers.  He had been fabulous with me in theatre and I was so glad he was able to be there.

Georgia's first pics.

I was wheeled back to my room via the ICU, I saw my Mum, Dad and brother Aaron along the corridor they had been in to see Georgia and said they were very proud of us and she was beautiful.  Andrew’s parents and brother Craig met me outside the ICU, Andrew was already in feeding Georgia through her NG tube, he became quite an expert at this.  I had my hands sprayed with antiseptic and then my bed was wheeled alongside Georgia’s little cot and she was handed to me to hold.   She was all wired up and had a  splint on her arm where the drip was attached and had the heart monitors on her chest and the oxygen reading on her foot so her toe glowed bright red from the light.  I could have stayed there all day but my arms were getting tired and I had to get back to my room and get settled in, after all I had just had major surgery and boy was I starting to feel it.  I was excited to see that I had been given a private room.  I had requested this if possible as I did not want to be in a room with other parents and their healthy newborns.  Andrew, Craig, Robyn and Russell came in after I was settled and then they left me to rest.

Georgia in ICU - and with Grandparents Robyn and Russell Macaulay. (Andrew's Parents).

Dr Justo from Prince Charles Hospital came to see us on Tuesday evening, he had performed a fetal echo and confirmed Georgia’s small aorta and HLHS and said surgery would be on Tuesday 3rd June at Prince Charles.  Georgia would probably go over on Monday.

Wednesday 28th May

Mum and Dad bought a beautiful pink outfit and bootees, Aaron bought a lovely “baby girl” balloon and I had heaps of lovely flowers delivered, the room looked great.  We all went down to ICU and I had cuddles and we took lots of photos, we were only allowed two at a time in there so our family all took turns.   My friend Leah came to see me  she also was having a baby the next Monday who has HLHS.  She has really been one of my closest confidantes over the last few weeks as we travelled through this stressful time together.  Unfortunately I could not get down to ICU with Leah to show her Georgia  but I had a Polaroid to show her.  The hardest thing was that being my first baby it felt surreal, I had to keep reminding myself I had just had a baby.

Andrew’s cousins Lauren and Megan came in to visit and they were about to leave when Andrew came in so they got to see Georgia. We had to have one parent with anyone that visited ICU at any time so Andrew became the tour guide over the next few days when people came to visit.  I was so sore recovering from my c-section and could not get down as often as I would have liked.  I think this was one disadvantage, I was not mobile enough. 

I was asked if I was going to breastfeed but  I was so stressed about everything and had no milk in.  So Georgia had formula.  I found a lot of pressure over the issue and began to feel guilty about not breast feeding and thought if she died than it would be my fault for not breast feeding. 

Thursday 29th May

I began to cry and cry and could not stop, they called Andrew to come in and also called for the the social worker to come up.  The breastfeeding was at the root of the problem, I was feeling so guilty.  The social worker helped me to see that no amount of breast milk was going to fix Georgia’s heart and all she really cared about was that her tummy was full.   I was also confused about when we would be going to Prince Charles as some said Monday and some said Friday.

Andrew had a big bag full of presents with him and his friend Chris from Bundaberg was with him also.  It was like Christmas opening all the lovely things for our new little girl.  We went and had a visit with Georgia the nurse set me up in the comfy chair with pillows all around and I had a bottle feed.  Andrew had holds of Georgia too but at other times when we went down.  He was great and came to see me every day, twice a day leaving only when they turned the lights off at night.  He loved the warm lunches and had a good feed whenever he came in.

Friday 30th May

Georgia was to be transferred and as I was going home that day I had to be out of my room by 10am so I got up and dressed myself, no mean feat when you can hardly bend over to get your own undies on…..(big laugh), packed up and told the nurse I was off to ICU, this was around 9am, when I got down there I was only there around ten minutes and Andrew and Chris arrived.  We went up to my room to get my stuff out into the car and then we went back to ICU.  They were packing Georgia into the transporter to take her to Prince Charles.  I began to cry as it all seemed more real now, it was so easy to pretend that she was okay but now things were happening.  The weirdest part about going home was to be in a wheelchair surrounded by flowers and baby girl balloons but having no baby with you.  With my naughty sense of humour I was in the lift and said oh Andrew did we forget the baby.  Goodness knows what people thought.  My sense of humour got me through a lot of bad patches where I had to laugh or I would have cried.

Andrew took me home and getting up stairs was excruciating but I managed, I was so cold.  The phone rang when we had barely been home half an hour to say Georgia was settled at Prince Charles.  It was to be two more hours before we got up there by the time we had had some visitors etc. 

Walking into the high dependency unit at Prince Charles was good, it felt so comfortable there, this is the time that I truly felt I was Georgia’s Mum.  Andrew I looked at the board that said Mother - Jacqui, Father -Andrew and we were like yes this is our baby.  The doctor looked and said are you Mum?  It felt really good.  They had to move Georgia’s drip from her left hand to her right as it was starting to leak and she was getting cranky.   She had a dummy and was sucking away  happily on that especially when she was feeding.  They were trying to make her associate sucking with being fed and it seemed to definitely be working.  Mum, Dad and Aaron and Robyn and Russell visited the hospital that day with us.  It was easier here as Grandparents were allowed to visit even when parents were not there so Mum and Dad could come and go a little easier.  We booked a Red Cross Room for me to stay in at the hospital but I did not end up staying there as I could barely get in and out of bed unaided and Andrew was not permitted to stay in the same room as me so I went home each evening.  I had to get well too because Georgia needed us both.

I went back up on Friday night and had a cuddle.  We found this was the best time for cuddles as Georgia was so snugly and content.  She was still feeding every three hours so we were only there for some feeds, we would hold the feed for her when we could. 

Saturday 31st May

Two visits again today.  My milk came in this morning so I have decided to express and feed Georgia breast milk.  The hospital also has a machine and a breast pump that I can use there.  So from today Georgia is drinking my milk.  Each time I come up I bring a little cooler bag full of bags of milk and put them in the fridge.  Cuddles again today as well.  Andrew’s parents went to stay with his Aunty and Uncle for the night in Beenleigh so it is just Andrew, Chris and I at home now.  I am so glad Andrew has not been alone during any of this as he is hurting too.  We had cuddles again tonight.

Georgia with her orange socks - and having her feed via NG tube.

Sunday 1st June

Today we went in and Georgia was dressed in a cute little outfit with orange socks on!  We were also informed that she is allowed to try a breastfeed, Mum and Dad had come with us but left when we started to feed.  It was the most amazing feeling.  We had some trouble as Georgia and I had no clue but we had a bit of a good feed.  She had a snuffy little nose and sounded like a little piglet snorting away.  We finished a feed through her tube as we don’t think she got much.  I went and expressed as well.  Then Andrew and I went and had lunch.  After lunch his parents, Uncle David, Aunty Judy and Craig came to visit.  I  met them down in the foyer, I was so excited that I had had a breastfeed with Georgia I met them full of news of how well she was doing.   We all went up and took turns at going in as we could really only have three around the bed at a time.  I got to change her nappy today, wow you should have seen me I looked like I had twenty arms, I could not get her nappy back on and she was wiggling around like a little worm.  Having spectators did not help but we got there even if I did set off the alarms on the heart monitors by moving a patch on her chest when the wires got in the way.   While we were on the ward we chose a lovely little pink dress for her to wear for her baptism on the Monday.

Andrew and I  went up again that night after dinner and had a really good cuddle. We played with Georgia’s feet and hands and really got to know her.  She was really good at night as I said before and tended to open her eyes a lot more then and just look right at us.  It was hard for me to get comfortable in the chairs with my wound but I was determined to hold her.  There was talk of us giving her a bath today but that didn’t happen, I would have liked to get some bath photos. 

The "nappy incident"

Monday 2nd June.

This morning we went to the hospital at 8.30am and the minister arrived at 9am to do the baptism.  There was my parents, Aaron, Andrew’s parents and Andrew and I.  We changed her nappy which was very smelly and then just as we put a new one on she shot poo all over the sheets, oh dear it was very funny.  Another nappy incident for Mummy.  These would be the memories I will treasure.   We dressed her up in her beautiful frilly pink dress and bloomers.  We went with the minister to fill in details while Georgia had her feed.  The baptism went for around 20 minutes during which the Minister prayed for the surgeons for the next day in surgery as well.

Georgia with her Grandparents Beryl and Dave Orme (Jacqui's Parents) - and with Mum and Dad.

Andrew’s parents left to go back to Bundaberg, my parents and Aaron went home and Andrew and I stayed around.  We went and had some lunch..  We saw Dr Whight our consultant.  Andrew and I were at the hospital all day except for a few hours in the afternoon where we slipped home for a rest.  We saw the anaesthetist Paul Tucker that night and he explained his role in the process during surgery.  We saw Dr Pohlner (surgeon)  and signed the consent form and then had a tour of post op/ICU with one of the nurses that would be looking after Georgia the next day.   She said not to be scared of all the machines we said that we would just be happy to see Georgia get to post op.  I had a cry on the ward and I left the room because I had been determined not to cry around Georgia.  It was just something I had promised myself.

Georgia having her bath time with Dad and then cuddles before surgery.

Tuesday 3rd June

This morning we got up very early and got ready to go up to the hospital.  We were there by 5.30am.  When we walked in Georgia was asleep.  We had a nurse we had not met before.  She said to go and get a cup of coffee or something because Georgia was asleep and we would not be bathing her yet but we chose to stay beside her bed.  She was beginning to stir when she heard our voices anyway, she had been doing this for a couple of days now so she was awake before long.  We bought in a Winnie the Pooh in his pyjamas to go with her to post op and he got a hospital tag attached to his  foot that said “I belong to Georgia Macaulay”.  I had pinned two guardian angels to the little pillow on the front of him.  At around 6am we began to prepare Georgia for surgery by washing her all over with Hibblicleanse (not sure of spelling) as this reduces infection.  The nurse washed her head and then Andrew bathed her, I took photos.  He looked ever the proud Dad.  We dressed her in a little white hospital gown so small it was very cute and very sad at the same time. 

Georgia's having her last cuddles with Mum & Dad prior to surgery.

After this we had to wash our hands and put on a gown each.  The nurses pulled the curtains around us, took off everything except her drip and I held her first.  It was very hard for me as she was nuzzling my breast, she must have been able to smell my milk.  All I wanted to do was feed her but of course I couldn’t she was fasting for surgery.  She kept moving her mouth.  The wardsman was meant to come for her at 7.30am so I wanted Andrew to have equal time, I gave Georgia to him at 7am.   We talked to her and I told her that she had to come home to play with all her pretty things.  The nurses changed shift just before the wardsman came down about 7.45am, that is when it really hit  me that time was moving on and our little girl was going to surgery.  I began to cry and was so overwhelmed. We got a photo of her together and then we had to go.

We walked with the nurse and wardsman to theatre, Georgia had a nice toasty warm blanket on.  We walked to the theatre doors and there we were asked some questions by the theatre staff such as did we realise what procedure Georgia was going to have.  I remember saying yes I understand all too well.  I was playing with the downy hair at the back of her neck as I was talking to them and she was just looking straight at us.  I said to them, “You can’t have her” and they said “We wish we didn’t have to take her”.  I told her to be a good girl and we would see her tonight.  With that they wheeled her away, the nurse took her toy and dummy to post op to wait for her and we went home.  They said that by the time they got all her central lines in etc that it would be about 9am before surgery started.  When we were leaving the hospital I said to Andrew “I don’t know why I am so scared I am 99.9% sure she is going to be okay” He said “I know”.

We went home and began what would be the longest day of our lives.   We filled in details in her baby book.  We decided to go out as we had a beeper and the hospital also had our mobile telephone numbers.  We had told our family and friends not to call us as we would freak when the phone rang.

We went to Chermside shopping centre and returned the boys baby clothes and looked around at pink things but did not buy anything, mainly because we could not see anything we liked.  We went and got our photos developed that we took that morning, had some lunch and then went home.  When we had not heard anything by 4pm I looked at Andrew and said either it is going well and just taking a long time or they cannot get her off the heart lung bypass machine, I knew from research that that was a common problem they faced during heart surgery. 

The phone finally rang around 6pm and it was Dr Pohlner requesting us to go to ICU at the Prince Charles.  We were so lucky to have been able to go home to all things familiar as we only live 5 minutes drive away. I quickly phoned my family and told them we were called to the hospital, Mum asked me if I wanted them to come and I said I will call you.  We got there in record time and phoned through to ICU  to let them know we were there.  There is a little waiting room that you go into while you wait to be shown through to ICU. There were some other people there waiting to see someone as well.  A nurse came down the hallway followed by Dr Pohlner in his surgeons gear, we were taken to a room and sat down.  Dr Pohlner said that they had done the surgery, but they were having trouble getting Georgia off the heart lung bypass machine, I just went cold, how could I have known.  They had tried 4 times and her heart just did not want to take over, they can only keep giving it a rest for so long each time and her heart was stopping beating by itself.  He said they would go and try again.

Andrew and I were both crying and I said to Andrew we have to start thinking about Georgia if she was not strong enough to come through we did not want her to suffer.  We called our parents, Mum, Dad and Aaron and Andrew’s brother Craig came straight up.  Andrew’s parents were in Bundaberg so could not get there.  We all waited tensely in the waiting room and to look at Dr Pohlners face when he came down the corridor I just knew.  He came in and said Georgia passed away about 10 minutes ago, that was around 7.10pm.  The worst news you can get had just been delivered.  I asked can I see her without drips or tubes.  He said of course you can but they had some things to do as happens when someone passes in theatre the police have to come.   We waited in the waiting room for what felt like an eternity, phone calls were made and many different emotions went through everyone.  I felt guilty because I was relieved for Georgia that she would not have to suffer anymore.  I had always said that God would take her if she was going to have a tough time.    I went to see the nurses at the children's ward, I think I just needed to go there to see that Georgia was not in her cot there she really was gone.  The same people that had been in the waiting room were back and said long wait is it.  We just said yes, after all how do you tell someone your baby just died.

We were finally shown in to see Georgia 2 hours later.  She was wrapped in a beautiful embroidered blanket and had a nice white woolly hat on.  She looked so peaceful.  Mum, Dad and Aaron came in to say goodbye and then they went home.  Craig came in and then waited for us outside.  We sat and held Georgia.  They asked if we wanted photos to which we said no.  I held her and then Andrew held her and then I held her once more before we put her back in her cot.  I left and then went racing back in, told her I loved her and thanked her for coming.  I cannot describe how I felt leaving the hospital that night it was like I was on drugs, I know now it was shock.  I was laughing because it was raining and I had to run through the rain to the car.  Ironically it had started to rain at 7pm when Georgia went.  I was okay with seeing Georgia because I knew her soul was at peace already with God in heaven.

We looked back that night and thought about how content and cuddly she was with us that  morning before surgery, wide eyed looking at us.  I wonder if she was saying goodbye. 

It was not until I got home that we cried and cried.  The next few days passed in a dream like state and we are so fortunate that my brother Aaron helped with all the funeral plans and all we had to do was go to sign the papers.  We saw Dr Whight for a consultation on the Thursday night.  He is such a warm and caring doctor.   The service was held on Friday 6th June at 10.30am at Albany Creek Crematorium in the chapel.  I read a poem with Andrew by my side, this poem is published on this website, it was sent to me through a HLHS group in the US and it was originally about a Mommy but I changed it to parents as I feel it takes a Daddy too.  We played “One Sweet Day” by Mariah Carey at the end of the service.  She had a lovely send off.  We wanted it to be a celebration of her life and it was.

Over the last nine weeks since Georgia passed away, Andrew and I have had our bad days and our good ones.  We know that if she had lived we would have done all we could to help her get through her life with  HLHS but we are relieved for her that she did not suffer.  All she knew was love for those seven days she was here.

We are scared to have other children as we don’t know what the future holds but we hope to update in the next few months with the news that I am pregnant.

There has to be a reason with everything that happens and I am sure that that will become obvious to us one day.  At the moment it is hard but we have to keep going.  I am sure that Georgia looks down on us and is proud that we have not fallen in a heap. 

It really does make you less tolerant and when people whinge about sleepless nights and endless dirty nappies they just don’t know how much we would give our right arms to be in the midst of all that.

We went and spent a week at Noosa from 13th to 19th July, it was lovely to get away.  This whole experience had bought Andrew and I closer together.  He is great when I cry he just cuddles me and lets me get it all out.  We talk about Georgia a lot and if that makes people uncomfortable then so be it.  She was our baby and you cannot ignore 9 months and 1 week of your life.  Goodness knows I can’t ignore the stretchmarks!!

We saw Dr Pohlner on Monday 21st July and went back through everything.  We are to tell them of any subsequent pregnancies so that we can be ultrasounded by a cardiologist etc.   It was hard to go back to the hospital, Lyndall the social worker met us when we arrived and gave us Georgia’s dummy and a little record book.  We finally found out that our baby was 49cm and ironically had scored 9/10 on the apgar tests at 1 and 5 minutes.  Little details that mean so much.

Andrew & Jacqui on the day of their good friends wedding.

We had the first person ask us where our baby was when we attended a wedding on 26th July, the weirdest thing was I find myself apologising for making people feel uncomfortable when they did not know.  I have to stop doing that.

+++Sadly our friends that had their little boy Darcy with HLHS on the Monday following lost him also on Thursday 5th June.  We have become good friends through tragic circumstances.  Leah and Steven if you read this I am sad and happy all at once that you are here to share this journey with us and you will never know how much that means. +++

The weeks have passed since we lost our precious Georgia.  We talk about her a lot and she is still a big part of our everyday lives in our memories.  We have some beautiful photos that  make us smile.  On reflection Andrew and I still have decided we would never have done this any other way.  We know in our hearts that we have no regrets in choosing to take the surgery option.  For us personally there would always have been the "but what if she had got through the surgery".  We still lost Georgia but we had seven wonderful days with her to get to know, cuddle and kiss her and she was surrounded by love the whole time she was here.  Georgia had so much love to give and she will always be our little girl. 

We hope you will continue to visit our page and share with us our journey as even though Georgia's stay was so brief our story hasn't ended we are sure that our lives will continue to be touched by hers so please remember to check in on our updates and other special pages we hope to add over time.

I thank Deb for making this website and also Jo Crisp.  They have both become special friends and we have never met in person.  Love to you both.

Thank you for reading our story and please feel free to email us anytime.

Jacqui & Andrew