Dear readers, how do I condense the story of my beautiful little daughter into a few small pages when what I really want to do is shout out from the rooftops what a wonderful little girl she was and what amazing gifts she brought to all who knew her. Well, one of the things she taught me was that I can do anything if I set my mind to it, so here goes.
I am Suzanne and with my partner Matthew, we gave birth this time last year to our lovely daughter Stella Isabella Judy Ann Tunks-Frawley. Matthew chose her first name, it means Star. He had it ready for her before she was made and I chose all the rest. I knew she would need some extra guardians for her journey, both in this world and after, and I wanted her to carry the names of some that meant a lot to me.
We found out Stella had Down Syndrome at 12 weeks and we set about preparing to be the best parents we could be for our little daughter, to give her all the assistance she might need so that she could live a rich and fulfilling life. Although the fact sheets we were given at the hospital only spelled doom and gloom for her, we did our own research and found out that there are many children and adults living in our community with Down Syndrome and that there are plenty of opportunities for learning and excelling and living a happy and rewarding life.
Unfortunately, our 18 week scan revealed that Stella had a very rare and complex heart condition. This news was very distressing for us. We had come to terms with having a baby with some extra needs and all of a sudden we were faced with the possibility of losing her, either during pregnancy or soon after birth. We were told that there were a few surgical options for her. She was diagnosed at the time with Hypoplastic Left Heart Syndrome which means that her left heart was only half its normal size and barely functional. In most cases, babies with this condition need open heart surgery within the first week of life, then again around 3 months old and then again before 4 years old. This surgery is very complex and most children have to stay in hospital between the first 2 operations. We were told that we could either go to Sydney or Melbourne for up to 5 months from a couple of weeks before the birth and for many reasons, we chose to go to the Children’s Hospital at Westmead.
We spent the rest of the pregnancy trying our best to remain positive and organizing our lives to accommodate this new adventure ahead of us. We moved to Sydney 2 weeks before our due date and enjoyed some calm time before we finally got to meet our little Stella Bella. At Westmead hospital on the 10th of December, at 5 minutes to midnight our little star was born. We were so excited to meet her at last but frightened too at what lay ahead for us all. She was whisked away within seconds and placed in a high tech intensive care crib. Amazingly, she didn’t need any oxygen and her apgar scores were 9 and 9.
I watched her being wheeled out of the room within minutes of her birth and Matthew went with her to intensive care, where she was prepared for the journey to the children’s hospital next door where she was to be admitted into the Newborn Intensive Care Unit known as the Grace ward.
Matthew was very lucky to be able to stay right beside her all the way. He fell in love with her in an instant and was very proud to be her Dad and to be looking out for her. I had to wait to visit her until 5 in the morning and it was so nice when I finally got to her. She was a gorgeous little baby girl weighing in at a healthy 3.45kg and 50 cm long. When I saw her in the Grace Ward, she was hooked up to some machines but we got to have a little cuddle of her and just like every other parent on that first night we were proud as punch.
Stella did so well in her first few days that she was transferred to the High Dependency ward. In that ward, parents can help to take care of their babies a lot more. We were very impressed with Stella’s skills from the first few days. She had her first breastfeed at 3 days old and was a champion at it! Because the doctors were worried about her tiring herself out, we only fed her every second feed and she was given a nasal gastric tube for her other feeds. Life quickly became routine. We did 3 hourly feeds, most of Stella’s nappy changes and had lots of cuddles and even a bath, all under the watchful eyes of a variety of nurses and doctors. We came up to her bedside early enough each morning to catch the doctors rounds so that we might start to understand what was happening with her heart and how they were going to deal with it.
It sounds unbelievable now, but really the doctors didn’t share very much information with us. We thought that Stella’s heart was better than they had first diagnosed and therefore she didn’t actually require open heart surgery in the first week. In actual fact, we found out much later that Stella’s heart muscle was very weak and that, along with her small left ventricle and 2 holes in the heart, meant that she wouldn’t have been able to cope with such a major procedure. When Stella was just over a week old, she started showing signs of heart failure. Her heart was not coping and it was affecting her lungs and her oxygen levels. It was decided that she should undergo a Pulmonary Banding. It was hoped that this procedure would give her the time to grow and hopefully give the heart muscle a chance to strengthen so that she could undergo the series of operations that she would need in order to survive long term.
Her operation was performed on Christmas Eve. We sat in the surgical waiting area as they wheeled our lovely little daughter away from us. It was a terrifying experience but thankfully our family were all waiting with us and the time passed quiet quickly. We rushed back to see her as soon as she was sent back up to intensive care. Oh dear. There were tubes everywhere, she was attached to machines and medications and had a big wound right down the centre of her chest, but all we could think of was how grateful we were that she had survived the operation and that now she could start to heal and we could get closer to taking her home with us. We hung her stocking next to her crib and Santa came and brought her gifts and one of the kind nurses took a print from her tiny foot and made it into a Christmas card for us to keep.
On Christmas morning, we were filled with hope and joy. My older daughters Laura and Amelia came to visit and we opened our presents together and shared some good cheer. In good spirits we went upstairs to see our little girl. When her cardiologist came around, our high spirits were squashed as he said he had his doubts about her surviving this operation and the recovery period. We spent the next 24 hours beside her bed, willing her to make it through and, as she did so many times in the future, she waited ‘til she was ready to pull herself together and surprise everyone. Once again we were hopeful and settled back into the routine of feeds, changes, cuddles, stories and visits from family. Soon we transferred to the Edgar Stephen Ward which is the specialist heart ward for NSW.
We settled down to taking care of Stella and living a bit more like a normal family. The focus during this time was to help Stella to gain weight. We tried everything that was suggested but she gained very slowly. Each morning she was weighed and the pressure that put on me, as her mother, was quite draining. For fun we started taking Stella out for walks in her fancy pram.
We took her down to the cafeteria with us for most of our meals and the staff always made a fuss over her as she was such a cutie. We took her out to the park to see the birds and we even escaped the grounds sometimes just to feel a bit of freedom as a family. We stole away to Parramatta Park and up to a nice Thai restaurant a couple of times. You have to live on hospital food for 7 weeks to appreciate how desperate we were for change! Finally on the 2nd February, 2010 we were allowed to bring Stella home to Canberra. We couldn’t pack the car quick enough to get out of that place and head for home. After a nerve wracking trip, we were welcomed home with a lamb roast, a surprise nursery set up and a very excited family.
Life at home was wonderful, even though we rushed off to emergency quite regularly. Stella’s heart failure returned so it became very easy for her to gather fluid on her lungs. We learned very quickly what signs to look for and had the amazing 24 hour support of our wonderful paediatrician Dr Tim McDonald.
In between hospital visits we spent our days helping Stella to grow and develop as best she could. We were lucky to have support from Therapy ACT in the early days and had been given techniques to help Stella with her progress. Stella was excellent at reaching and grasping little things and her eye control always impressed. She had undergone hearing tests at Westmead and had passed with flying colours. So all in all, apart from the rotten heart problems and their side effects, she was doing very well developmentally. She spent many hours on her playmat at the window, looking out at the flowers and the sky.
She loved to be read to and was interested to see each new page. We dressed her up and played with her and hoped for her heart to strengthen. Many of our friends had never had the chance to meet her, so we held a big party at the adventure playground. We were in hospital at the time, but were given a leave pass to attend and my family set up a beautiful party for her. It was a very loving and emotional day. We had no idea what the future might hold but we were all trying our best just to celebrate our sweet little daughter. Stella lay up in her pram and smiled at all the little children that came to meet her. She was like the queen of the fairies! As a symbol of our hopes for Stella we released 12 white doves and it was a wonderful day for all of us.
That afternoon back in the hospital, Stella needed oxygen for the first time and I was terrified. We had been due to drive to Sydney for a review the next day but it was decided to send Stella and I in an air ambulance. Quite an adventure! We were welcomed into the Edgar Stephan Ward like family, and we felt very safe and in good hands. At the end of the week we returned home and felt revived and hopeful again. Life went back to our new ‘normal’ again. We saw Dr McDonald regularly in his rooms and in between he came to Stella whenever she was in hospital, even at 2 in the morning. We felt like Stella was a VIP. We never had to wait at emergency and were always given excellent care. She would often only need a few days of help in hospital to remove the fluid from her lungs and then we would be home again.
On March 19th, Stella was in hospital when she picked up pneumonia. She was breathing very fast, her heart rate was skyrocketing and she had a temp of 39. She was very agitated and that was very upsetting for us. She was flown to Sydney within a few hours, this time by helicopter. I went with her and although I normally was frightened of flying, I was only worried about her so nothing else mattered. She was sent to the Paediatric Intensive Care Unit at Westmead and put on a c-pap machine and oxygen as they tried to calm her and get her temp down. She was not settling at all and the nurse mentioned that in the old days they used to use big prams to settle babies. We brought Stella’s pram up and they popped her in it and she settled straight away. From that day on, she was always allowed to sleep in her pram in hospital. It made her happy to be in her own space and it was much easier for us and the nurses to soothe her in it.
Over the next 5 weeks, Stella’s heart condition deteriorated a little. She was in and out of fluid overload and put on cpap for all sleeps. Her weight gain was not improving much and she needed oxygen most of the time. On good days we tried to enjoy family time together and we took her walking again and spent time outdoors enjoying nature. On her bad days we fretted and rocked her and cuddled her and tried our best to keep help her spirits up. We had a room with a bath so Stella and I could bath together. We learnt how to enjoy bath time with an oxygen tank and tubing and Stella and I had a lot of fun together. Matthew and I took turns staying with her at night.
At 3am on the 17th of April, I had just gone to bed in the parent’s room and Matthew had taken over with Stella when I heard the emergency bells go off. Just in case, I went to check that Stella was ok but as I came to her room, a nurse warned me that things weren’t good. Stella’s oxygen levels had dropped and she had gone blue and Matthew hit the alarm. Within seconds the nursing staff were in the room and the PICU team came running through the corridors to help. 4 doctors at once were trying to get a line into her and Matthew and I just stood there in shock holding tight to each other. She was transferred back to PICU where she was put on Bipap, which is one step below intubation, and helped her to get enough oxygen into her lungs. The next few days were very scary. We were advised to call our family to say goodbye to Stella as the doctors were sure that she was not going to survive this latest ordeal. We felt a lot of pressure from the doctors because they did not want to intubate her and they felt that if it came to that, we should just let her go. We had made a commitment to Stella in our womb, that we would do everything possible to help her to overcome her health issues and we were not ready to give up and neither was Stella. Within a few days Stella made a remarkable recovery, she was off the bipap and off the oxygen completely. The doctors were surprised but had decided that Stella was now ‘inoperable’. Her heart did not have the strength to survive any further surgery and so there was no longer anything that they could do for us other than help us to decide where we wanted to be with Stella until she died. They said that we could stay in the hospital or go back home. Of course we came home.
Stella continued to astound everyone as she finally started to thrive. With the help of Caring for Kids, The Palliative Home Based Care Team and the wonderful Dr McDonald, we were able to care for Stella at home and she received the very best care of her life. We weighed every nappy, did all of her medications, and up to 10 tube feeds a day. We had cpap and oxygen at home for when she slept and was unwell but generally we kept her better then she had ever been. She started to gain weight and to develop more and we got into a great routine.
Matthew went to work for a few hours a day and I had help to care for Stella during that time. In the afternoons and evenings, we had lots of fun together. In 4 months at home, all of our evening meals were provided for us by our family and friends so we were able to spend the time we needed to care for Stella and to enjoy her. I bathed with her every night and Matthew dried, weighed, and dressed her. We cuddled her and took turns dancing with her and she smiled and smiled so much it filled our hearts with joy.
We took lots of little videos of her and about 7000 photos and we made sure each day was special as we didn’t know how long we would have her for. Beneath all of this we hoped desperately that there might be some improvement for her heart and that she might be reconsidered for surgery so that we might be able to keep her with us for a long time.
We managed to keep her out of hospital for 50 days and after that there were only a few stays in Canberra hospital. We took her out for walks in the chilly winter sun, often with oxygen and always with a cover over the pram. She loved to watch the birds and look at the trees but mostly she just loved to look at me! She spent many hours content, with her head on my shoulder or being bounced around in Dads arms. We had a lovely little life together even though it was very different to what most parents’ experience. We were so proud when winter ended and she had made it through and we were looking forward to the warm weather so that we could start going out for picnics and lots of nice walks with Stella.
On Saturday night, September 4th, after a few days of an upper respiratory infection, we took Stella to hospital where she was diagnosed with pneumonia. We were scared but calm as we had been through so much in the past and she had always pulled through. Unfortunately, around 2am she started deteriorating. She was put on to Bipap, but it didn’t even seem to help. Her little heart was really struggling and she was finding it really hard to settle. Dr McDonald came and tried everything to help her. He had always supported us inproviding everything possible to helpStella recover from these ordeals, evenif that meant bending the rukes a little.We were a little village caring for Stellaand he was our Chief! Even though itwas extremely dangerous and might notwork, we decided to intubate Stella andarrangements were made for her to betaken to NICU to be cared for. Whilst wewaited, my family were all with us andtook turns kissing Stella and wishing herwell, she even managed a little smile forher sister Amelia. I was holding her littlehand then let go for a minute to talk tosomeone when all of a sudden, heralarms went off. Her little heart was tootired and just stopped beating. Somehowamongst the drama, I leaned in and heldher and whispered in her ear. I wasovercome with a calmness that I hadalways hoped for and was able to helpher through the experience of leaving us.What an amazing little girl. She wassurrounded with so much love and kissesand her heart chose what seemed like aperfect moment to let go. She saved usthe trauma of intubation and the very realpossibility of having to turn it off and sheleft us with no regrets. We did everythingwe set out to do for her and she beat somany odds to stay with us as long as shedid. She left us on Father’s Day,Matthews first. She was 5 days short of9 months old and the gifts she brought tous and our family are immeasurable. Shewas and is our little Star and is the lightin our lives. We miss her terribly but arefilled with so many happy memories thatthey propel us each day and give us thestrength to cope without her here in our arms.
We were the proud parents of a beautiful baby girl with Down Syndrome and were looking forward to being active members of the ACT Down Syndrome Association and to an adventurous life helping her to thrive in our family and community. We came to The Buddy Walk in honour of our darling Stella Bella and although it was an intensely emotional day for us,we were proud to have raised lots of money to show support for the ACTDSA and were warmed by the kindness of the wonderful people we met on the day. We hope that we can be a part of your organisation in some way for many years to come and look forward to meeting you and your lovely children along the way.With much love, Suzanne, Matthew, Laura, Amelia and Angel Stella x x x