HeartKid of the Month

Jensen Ashby – Our Little Miracle

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 leiu 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.