HeartKid of the Month

Chelsea Mason. Our Heartkid: Chelsea as told by her mother Kate Mason

Having 2 girls already, we were pleasantly surprised to find out our 3rd planned pregnancy was twins, and yes, 2 more girls! Our world soon began tumbling down when one of our twins was diagnosed with a very complex set of heart defects, at my 26 week ultrasound. My only worry was if my little girl would be here for the long term as I loved her already.

We were referred to the Women’s and Children’s Hospital Cardiology department, in Adelaide, for follow up. A very thorough echo was performed and we were able to meet with Cardiologists, Clinical nurses and social workers in the weeks leading up to the birth. The information we obtained from Cardiology did give us some reassurance that our little girl was more than likely going to survive and have a good long term outlook. This helped prepare us for everything that was likely to happen. I spent many late nights scouring the web for everything I could find. It was all consuming. I then decided to record our journey. Somehow writing it all down was good therapy and looking back, it has been valuable to read about everything Chelsea and our family went through.

We were told her heart condition was reasonably complex. Our little twin b (as she was called in-utero) was diagnosed as having double outlet right ventricle, a large ventricular septal defect and critical pulmonary stenosis. I recall thinking this was a whole lot of things for one tiny little baby to deal with.

Chelsea and Amelia
Finally the day came for the twins to be born. They were delivered by planned c-section with so many people present in theatre it felt like a stage show! We had the head of paediatric neonate intensive care, paediatricians and nurses for each of the twins, aneasthesia staff and the theatre team along with my husband Jeff and my obstetrician. The delivery went well with Amelia born first at 2.2kgs and our little heart baby Chelsea arriving two minutes later at 2.1kgs. She was reasonably blue, but we expected that to be the case. They were checked over and Chelsea was taken for an echo, then to the intensive care unit for the prostaglandin to be commenced. This was the drug that would ensure her duct would remain open until she could be transferred to RCH Melbourne for a shunt procedure. For the next week, Amelia roomed in with me in hospital (a very easy baby, thank goodness!) and Jeff looked after the other two children at home. We all shuffled back and forth between my hospital room and intensive care to see Chelsea. It was overwhelming for our big girls with mum not at home, two new sisters one of whom was surrounded by complex monitoring systems. We did our best to normalize everything for the girls and keep our brave faces, but inside we were pretty fragile.

Chelsea holding her mummy’s hand
Chelsea was on the small side for heart surgery and it was decided that she would be kept in Adelaide until she gained weight. All good in theory but on day 5, complications started when Chelsea was diagnosed with an infection in the bowel, which, as we were to discover would require operations in the future. This often affects preterm babies, particularly those who are unwell from other conditions and where oxygen to the organs is compromised. As she was critical we were asked to stay very close to the hospital in case they were developments. We were told that although it had been detected very early, it could go either way. My own frantic research on the web discovered that babies have a 50% chance of survival. Oral feeds were stopped and she was administered massive doses of antibiotics to try and stop the condition. It was these unexpected extras that were horrifying. She may have done ok with her huge heart hurdles but we were well aware that other complications could come and destroy our hopes & dreams without warning.
Needless to say, there were so many mixed feelings about that time. We were totally besotted with both our new little babies but also absolutely distraught with worry about how Chelsea would handle all of the challenges she had in front of her.
Over the next week, the bleeding in her bowel stopped and she began to improve. The medication had worked!

Around 2 weeks, Chelsea started having heart racing episodes. After a few tests and lots of observation, it was concluded that she had an arythmia. More medication was required and within a week of adjusting meds and doses, her heart started to behave more consistently.

The journey continued with more steps back & then eventually forward. We were starting to become accustomed to life with a sick child. By the beginning of February, Chelsea had managed to gain weight and was ready to go to Melbourne.

Chelsea arrived in Melbourne with the Flying Doctors around the same time as us and was sent off for surgery the very next day. That was the darkest few hours of our lives – WITHOUT A DOUBT – EVER! We had no idea whether our beautiful daughter, who we had never taken home, held properly in our arms without tubes & beeping machines etc, would ever wake up and come out of heart surgery alive. It was so distressing and I felt like I was going to pass out or have a heart attack myself with the pain of leaving her with the surgical team.

Anyway, we dragged ourselves away and tried to keep ourselves distracted by getting some grocery shopping done – we had a family to feed!
After what seemed an eternity we got a call from the surgeon to say that the procedure had been successful and that we could see her in paediatric intensive care unit in one hour. The relief was unimaginable! We went down to see her but were kept waiting for over 2 hours. At one point a nurse came rushing out to tell us that there had been some emergency complications and they were having to re-open her chest right there in the intensive care unit. Our hearts sank. We honestly thought were about to lose her. About half an hour later, we were told to come and see her and that she was fine. We were told her shunt had formed a blockage and that they did indeed have to re-open her chest to remove the blockage. When we entered her little chest was still open, but covered with film. The surgeon told us that the next couple of hours would tell us whether or not the operation was successful. Thankfully Chelsea managed to get through that next couple of hours and it looked as though everything was going to be all right. Relief again! What a rollercoaster!

Chelsea after surgery
When we went in to see Chelsea, she looked almost unrecognisable. Her face was bloated, swollen and bruised. Her chest was still open with a wound drain hanging out. I was overwhelmed to see so many lines hanging out of her little arms and feet, along with numerous beeping machines and monitors including the ventilation unit. We felt so many emotions. We really felt for our tiny girl, who had already had her chest opened twice and had all these tubes and machines keeping her alive. I kept having flashes of losing her and thinking she may not live a life with her other 3 sisters. All the while, we sat holding her little swollen hands, tears of happiness streaming down our cheeks, thankful that at least she had made it through this first heart surgery.
The next few days, Chelsea raced ahead and amazingly got clearance to fly back to Adelaide on day 5! She returned to the Women’s and Children’s Hospital. She needed to recover and of course she still needed her bowel fixed. Unfortunately Chelsea soon took a few steps backwards. She showed signs of being unwell a few days after returning from Melbourne. She was very pale, almost grey looking. She had developed some sort of gastro bug and started going downhill very fast. Our cardiologist said the surgeon was pessimistic about the upcoming scheduled bowel surgery, but would review the case in the morning.

When we arrived in the early hours of the next day, Chelsea looked much worse. The surgical team came to review her and the head of surgery told us the surgery would be postponed and that he thought she looked ‘awful’! Before too long, the cardiology team arrived as did the team of intensive care doctors. Orders started flying around and a flood of nurses swarmed over Chelsea’s bed. The consultant in charge ordered an immediate blood transfusion, fluids and two broad spectrum antibiotics. I remember thinking we had just about every available person in intensive care attending to Chelsea in some way.

Next the results came back from her echo only to reveal a cyst type mass on the outside of the heart. Another more thorough echo was ordered and the cardiologist’s early diagnosis of the ‘thing’ was a pericardial cyst. Treatment would need to be carried out in Melbourne, presumably resection or drainage. By this time we had almost had enough. Our poor little darling had really been put through the wringer. It seemed there was an ever increasing number of hurdles she was having to jump. When would it stop?
As the week progressed, Chelsea improved in spirit, but her belly was really playing up. It became quite distended and hard lumpy bits of her bowel starting showing through her tummy. All the while, the surgeons were on standby for emergency surgery. Over the weekend she improved and surgery eventually went ahead. Once again we had to leave her with the surgical team. Lots more tears. We waited and waited, trying to distract ourselves. Eventually the surgeon phoned to tell us that a large stricture on the right side of her bowel had been successfully removed. The two ends had been rejoined and she had been stitched up. Our little girl was now the proud owner of 2 big scars but she had made it!

Chelsea was soon transferred to the ward and eventually, on day 65, we were able to bring our baby girl home for the first time. It was a magical day, particularly for our older girls who were desperate for our whole family to be together again.
The next few months were very demanding, with 4 children under 3, but blissful for us all to be at home together. We were totally sleep deprived but felt truly blessed. After nine months of regular visits to Cardiology Clinic, we were referred to Melbourne once again for further surgery. Our emotions soon started to spiral out of control once again as the fears of surgery were contemplated.

The day soon arrived and we all headed off to Melbourne. Two grandmothers, 4 children, Jeff and I flew to Melbourne where we had to rent two apartments. Unfortunately, due to a shortage of intensive care beds and nurses, days turned into weeks as we waited and waited. This was incredibly stressful, as Chelsea had her surgery cancelled 4 times! Finally a lengthy bypass surgery was performed, which all appeared to go well. However little Chelsea didn’t respond as well as everyone would have liked. Her heart, whilst repaired, was not functioning well. We were told this was not uncommon after a major surgery as a swollen heart and lengthy bypass surgery can cause the heart to take a little while to work correctly. As a result they decided to re-open her chest to take some of the pressure off! Oh not again!

Over the next week Chelsea made a few baby steps forward each day and after a long week in intensive care, she was finally transferred to the ward before returning to Adelaide a few days later.
It was so good to be home. Chelsea had a hard time recovering over the following weeks. Naturally, she had pain in her chest. Slowly she improved and today you just wouldn’t know by looking at her the many trials she has had to endure. How these heart kids get through these immense ordeals inspires, amazes me and overwhelms me.

Lately there has been some concern over her pulmonary artery. Her surgeon and Adelaide cardiologist have said that she may need more surgery but this will depend on how her heart grows and develops.

For the moment, she is home and we are ready to celebrate life for a while!

Today, Chelsea has turned the corner. She is well and developing both emotionally and physically. She is not yet crawling, but is finally sitting up. Her cardiologist anticipates she won’t need further surgery for at least 2 years! Furthermore, we don’t even have to attend cardiology clinic for another 6 months! What a relief!

It’s difficult to describe how emotional, stressful and heart-wrenching our journey has been this year, for our whole family. The journey has come at a huge cost to Jeff and me, both emotionally and financially, with many flights and a total of 5 weeks in Melbourne.

Our older girls had to give up their activities, swimming and playgroup, and we isolated ourselves from family and friends for fear of bringing any ‘bugs’ into our home and therefore jeopardizing Chelsea’s chance of survival. More than any of that, our darling Chelsea has had to endure so much to her tiny little body, all because she won that lottery that no-one would ever want to win. It’s very likely she’ll need ongoing valve replacement heart surgery throughout her life.
Family – finally together at home

HeartKids has supported us throughout this journey. We are most appreciative of the work of their Family Support Coordinator and all the services they provide to families like ours. Whilst our journey appeared unique, we encountered scores of others enduring similar trials. Heartkids South Australia has also allowed us to meet many other wonderful families who have shared similar painful experiences and helped relieve our self imposed isolation. We cannot thank the Adelaide Women’s and Children’s Hospital, the Royal Melbourne Children’s hospital and HeartKids SA enough, for their support and dedicated work for children with CHD.

Please support Chelsea and the many thousands of other children like her.

Jensen Ashby – Our Little Miracle

A parent’s story – our little miracle: VIDEO

Little Jensen Ashby, who is featured in this video, has his full story shown below:

I never imagined that I would have another baby, so when my test came back positive I was thrilled…scared but thrilled! It had been 14 years since my last baby, who was born completely healthy with no complications and I just assumed this baby would be the same.
My pregnancy progressed uneventfully, we had all the tests and everything was looking good. I remember going to the 18week ultrasound and all we could talk about was whether we were going to have a girl or another boy. We were definitely not expecting what was to come. The sonographer took such a long time looking at our baby’s heart from every possible angle until I finally plucked up the courage to ask if something was wrong. He told us that he needed to have a good look and send the report to our obstetrician. We received a phone call that afternoon to meet with our obstetrician first thing in the morning. This was at this point that we knew something was seriously wrong!
That night we slept little and cried lots, not knowing what was wrong with our baby, we just waited and waited for the morning to come. We thought that it was the longest night ever, but looking back, it was just one of many long, sleepless, tearful nights.
We were told that our precious baby boy had a serious heart defect called Transposition of the Great Arteries or TGA. The main arteries, the Aorta and Pulmonary Artery were in the wrong positions, which meant that while he was still inside the womb it wasn’t an issue but once he was born the oxygenated blood would not be delivered to his vital organs. He would need open heart surgery, a procedure known as an Arterial Switch for him to survive. I just sat there and cried, not knowing what this meant and not knowing what my baby’s chances of survival were and not knowing how we would ever be strong enough to deal with this.

Suzanne and Jensen

We were then referred to the Royal Brisbane and Women’s Hospital to meet our baby’s cardiologist, Dr Alex Gooi, who told us that our baby had standard TGA with no signs of other defects. Once he was born he would have to have a procedure called a Balloon Septostomy to allow the blood to mix to keep him alive until his open heart surgery, which would probably be scheduled for a month after he was born. We were also advised that the success rate for the Arterial Switch was higher than 90 per cent and that our baby should be able to live a normal healthy life if there were no further complications. We left there feeling completely exhausted, but slightly relieved that the prognosis was so good.
The rest of the pregnancy was difficult. Physically everything was going really well. Health-wise I was feeling great…but mentally, not so good. Most days I was positive, but on other days I would just sit and cry and imagine what it would be like to have my baby taken away to have major heart surgery. I also imagined the very real possibility that my little boy may not make it and I quickly tried to dismiss those thoughts before they ate away at me. I wondered how this could have happened to my little boy, was it something I did, or didn’t do, something I ate, vitamins I didn’t take???? The medical answer is that it is completely random and could happen to anyone and could not have been prevented. But even that thought did not make it any easier.
The day came for my scheduled caesarean section and we were a bundle of nerves. We had been staying at the Ronald McDonald House in Brisbane for the previous two weeks and walked over to the hospital to face the most difficult times of our lives.
Jensen Jeffrey Ashby was born 8 pound 11, in a theatre full of medical staff and was very, very blue. I was not able to hold him. I saw him briefly before they rushed him away. I was taken up to see him a few hours later and was told that he wasn’t doing very well, the balloon septostomy didn’t work and his oxygen levels were very low. They were in the midst of discussions with the staff at the Prince Charles Hospital as to what they should do. The next morning his oxygen levels were so low that he was taken by ambulance to the Prince Charles for emergency open heart surgery. I hadn’t even had a chance to hold him.
We drove to the Prince Charles to meet with the surgeon, Dr Andrew Clarke who advised us the risks of the surgery. To be quite honest I don’t really remember much of what he said, the staff were in the background saying that they had to take him immediately, as he was getting worse. One thing I do remember is being told by a staff member that there was a possibility that he could die, but they would do everything they could to help him. I was taken over to give my little man a kiss before he was rushed away..again.
Jensen was in surgery all day. All we could do was wait, hope and pray. Finally Dr Clarke came out to tell us that it was successful and we could see him shortly. I wasn’t prepared for the sight I saw. So many tubes, machines, lines, doctors, nurses, lots of blood and a very puffy, swollen little baby. It was horrible, but he was alive!
Over the next week, there were various complications, a major bleed, renal failure, problems with his lungs and he still wasn’t improving. His chest was closed, then re-opened because he was still very swollen. We kept waiting to be told that he was on the mend, but nobody could tell us that. Instead we were advised that he had Pulmonary Stenosis, his pulmonary artery was narrowed and he needed another operation to widen it. So off he went for his second open heart surgery in less than 2 weeks.
This one was a little easier, as we were told that the risk of him not making it through this surgery was around one percent. I was so happy when he picked up almost immediately after the second surgery. We spent one more week in ICU where we finally got our first cuddle at almost 3 weeks old. We were then transferred to the ward and went home a week later.
We were told that there was a chance of Jensen having Cerebral Palsy because of the low oxygen levels, so we have been having regular physio and paediatric appointments and were told we would not know whether he had the CP or not until he started walking (or not walking) He was slightly behind on his milestones, so there were some concerns, but on Boxing Day, a few weeks before his first birthday Jensen took his first steps.
We still have to see Dr Alex Gooi every 3 months for a check up at this point, as there is still some narrowing of his pulmonary artery, but the good news is that the artery is growing. There is always the possibility of more surgery down the track, but our fingers will be forever crossed. Thanks to Dr Alex Gooi, Dr Andrew Clarke, all the staff at the Prince Charles Hospital, the Royal Brisbane and Women’s Hospital, Ronald McDonald House, obstetricians, HeartKids Queensland Family Support Coordinator Silvia Stohr and the sonographer who discovered the defect so early…we know have a gorgeous, happy and healthy little boy.
Our special thanks are extended to HeartKids for their ongoing support and for the work they are doing to ensure less children like Jensen are born with CHD.

No presents please.. I am just about to turn one and am happy to be alive!

Little Jensen is just about to turn one.. He and his family have asked that donations be made to HeartKids in lieu of presents!

Elizabeth’s journey

My name is Effie Heldzingen and I have a Heartchild called Elizabeth.
Elizabeth was born at St George Public Hospital on 9th November 2005
Her doctors noticed our baby was distressed and they decided at 8 ½cm dilated that I have an emergency caesar.

The caesarean was all a bit of a blur to me as I was in a daze. However I did see our daughters face for a split second, and all I could hear in the background was its ok, keep breathing little one then I had a feeling that something was wrong.

When Elizabeth was born she didn’t cry straight away and she was blue and floppy. She was then taken to the special care unit to be monitored. I still had not held my baby in my arms and when I came back from the op theatre she wasn’t there.

They told me she was still in special care and they would let me know how she is. At 3.30 am we were told that she may have a heart condition and that Elizabeth would be taken to Sydney Children’s Hospital via nets to have further tests.

My husband and I were speechless, I still had not held my baby and was so distressed. They brought her into the ward for me to see before they took her away, I wasn’t able to hold her but just seeing her from a distance made me feel so happy and sad at the same time.

Leslie went with Elizabeth with nets to SCH and he called later on in the morning to inform us that she has been diagnosed with 3 Complex Heart Conditions
1) Transposition of the Great Arteries(TGA)
2) Ventricular Septal Defect(VSD)
3) Pulmonary Atresia

These heart conditions are common on there own however its a one in a million chance that you would get all these three conditions at once.

I was transferred to the Royal Hospital for Women’s later that day so that I could be closer to our daughter.
A meeting was scheduled with the Surgeon and Cardiologists to discuss Elizabeth’s conditions and we were told that there will be 3 operations to take place.

Elizabeth had her 1st Procedure called BT-Shunt at just 2 days old. Then at 1 year she had the 2nd Operation – Glen Procedure which was aborted half way on the table as Elizabeth’s heart had swollen from 13 to 20. The Glen Procedure was rescheduled 3 months later and proved to be a success.

Elizabeth always had a smile on her face – despite the pain and discomfort

Her 4th Operation will be when Elizabeth is about 4-5 years of age and this operation is called the Fontan Procedure.
Her doctors noticed that Elizabeth has a leaking valve which may cause some concern long term and further down the track she may need a pacemaker.
Being given all this information at the time was all confusing and trying to understand all these complexed heart conditions was frightening. We both wanted to know more but to find information was extremely difficult.
More and more children are being diagnosed with Childhood Heart Disease and we as parents of a Heartkid are amazed at the lack of awareness out there for our children as its the biggest killer of all.
Leslie and I would like to thank HeartKids for giving us the opportunity to learn from other families with Heart kids.
When Elizabeth’s 2nd operation was aborted we were devastated. Karen Sherlock, the HeartKids Family Support Coordinator, was there to support us even though we crossed paths in and out of the ICU unit but she was there and that gave us inspiration. Thank you for your kindness and thoughts Karen. You are wonderful!!
We are so lucky that we have a big family unit with lots of support to go around. Not to mention the Doctors and Nurses who guided us along the way.
I guess we are all given situations in life and we are more than capable of dealing with them. Sometimes it can be hard to accept but other times it makes you appreciate all that you have in life.
This is why it is so important to support a charity like HeartKids. HeartKids provides support to families, raising awareness in the community and donating much needed funds to research.

I update Elizabeth’s website as often as I can please feel
Free to take a look and see what mischief Elizabeth is up to:
go to http://www.heldzingen.com/elizabeth

Regards Effie, Leslie and Elizabeth Heldzingen

Please support Elizabeth and the many thousands of other children like her.

Makayla Tyrrell

Makayla’s mother discovered something was amiss with her pregnancy during her 20 week ultra sound which showed her child had a major heart defect. Whilst she was given options to terminate the pregnancy she chose to keep her baby. On 9 December 2007 the world welcomed Makayla.

Within 2 hours she was transferred to the Royal Children’s Hospital in Melbourne where it was confirmed she had a multitude of heart defects which included; Transposition of the Great Arteries, Double Inlet Left Ventricle, Ventricular Septal Defect and Hyperplastic Right Heart Syndrome.

The ensuing months have been somewhat challenging for Makayla and her family, with a series of operations and constant trips to the hospital. She is currently booked in for her fourth operation and has another planned at around 5 years of age, things are looking positive for this beautiful girl.

Her mother Lauren reports she has been most appreciative of the support offered to her and her family by HeartKids. “These have been most challenging times, but we take each day as it comes. Everyone has to keep smiling as Makayla never stops smiling. We are lucky that we have a happy baby.” says Lauren.

Update

Young Makayla has been in the news in recent weeks due to the repeated cancellation of her surgery. This has been due to a lack of ICU beds and trained nurses. See article on ‘Surgery Cancellations’ for the full story.

LATEST NEWS

We are delighted to announce Makayla has had her much needed operation and has come through this successfully. We wish her and her family all the best for the future.

Please support Makayla and the many thousands of other children like her.