Miss Katie was admitted to our state Cardiac service at the New children’s hospital yesterday after we got sent here from the regional hospital.
a lot is going on, we are all still trying to understand this new part of Katie’s CHD journey.
Basically she is having very long runs of rhythms in her heart that are reducing the quality and efficiency of her single ventricle heart.
It has to be addressed and hopefully we get a treatment plan today, but Katie has many tests to navigate today also and they are talking to us about several causes and treatment options depending on the outcome of tests.
Seems only fitting that we are sitting in a hotel in Cairns waiting to see Katie’s cardiologist, being that it’s CHD awareness week!
Miss Katie’s symptoms have got worse this week, headaches, left arm pain, racing heart, vision issues.
A visit to ER on the Cape, this week just confirmed what we already knew. She had to fly to the city for more tests.
So we find ourselves sitting here waiting to see the Dr Monday next week.
It’s raining and the CHD get together planned for tomorrow (day of hearts) has been cancelled and replaced with flood warnings.
Miss Katie is bored and worried…..can’t blame her even shopping for some new clothes proved too much.
Please keep us in your prayers and share Katies story, CHD needs a cure and only awareness & research is going to achieve that!
Our family has been patched together and the results are a beautifully crafted quilt, Parents from different parts of Australia, children from different genetics and nationalities with different abilities and needs, together we are perfectly crafted and beautiful in the eyes of those that see beauty in rare and precious things.
Our son Mr J is no exception, J who has Down syndrome, was brought to us via adoption when he was 6 months old.
Master J was also born with a heart conditions called ASD, VSD and Cleft Mitral valve. These conditions are very often fully correctable by surgery and J had his first surgery prior to us adopting him at 6 months.
Often that is all that is needed as his condition is one of the more commonly seen, it’s also a common defect seen in children with Down syndrome. Sadly though J had some issues that required another open heart surgery at 4 but has since not looked back heart wise.
While CHD is horrible, it isn’t always a life long battle, in well over 50% of cases it can be corrected and those children will likely grow up healthy and strong
J is now 16, he is strong, funny, smart, cheeky and fully of mischief, he is well liked, popular for very often the wrong reasons but usually funny reasons, he loves his fishing, quad biking and Dog Macy like their is no tomorrow. He brings us so many laughs, so much joy and we can’t imagine our life without him.
Down Syndrome & CHD might be his labels to the medical and wider community, but it does not stop him living a full and happy life.
This story is a bit different to many you might read during CHD awareness week, Miss Katie’s story is kinda unique,
It began 16 and half years ago, it was a cool June day, it was the kinda overcast day that makes you want to crawl back into your bed with a good book and hot chocolate, despite this I was on my away to a local hospital.
Several days before my husband and I had been contacted about a little baby that had a complex Heart condition she had been in hospital for many months.
We had been foster cares for just 2 short years but, I was a trained Enrolled Nurse and we had what they needed “experience” with special needs kids.
We agreed to meet her……
As I arrived at the hospital I was met by our foster care agency worker Ali, and Katie’s Primary Cardiologist Dr J.
He looked sceptical even worried. He asked for us to follow him into a conference room, before us many people sat, all ready to tell us the worst possible outcomes that could be her life. I know they only wanted us to know the reality, but if I hadn’t of know better I would have thought they were trying to talk us out of taking her.
Despite this, the meeting with the staff went well. The Meeting was to prepare us for our life ahead with Katie. They informed us of the risks and the possible journey she might have.
The truth is nothing can prepare a family for CHD. The world of CHD is a new scary foreign world, it’s filled with situations that no baby or family should have to endure, with new complicated terms to learn, painful and stressful procedures, high risk surgeries, new challenges to over come, its just a whole new world.
Meeting Katie for the first time was magical………she was just so amazing, so happy and engaging, it was hard to imagine that she was the child that I was just been told may not survive, or at best live a life of life long disability………As I looked down at her over the cold steel bars for her hospital cot, I had NO choice but to take her home….She was so innocent, so fragile but so strong at the same time, how could I even contemplate leaving her, no matter what lay ahead.
It had been made clear to us by DOCS that it was thought that Katie would eventually go home to her first Mumma….She just had to “get her life together” so we just needed to care for her in the mean time……….So for now we just had to love and nurture her.
Katie had many issues. Her health was very fragile and a simple cold had us heading to ER so many times I lost count.
She had so many medications to learn. Her feeding turned into a constant battle of vomits out v’s calories taken in and her other medical issues a constant worry………Life with her was a roller coaster ride, but we adored her, even while we supported the plan to have her returned home we fell more and more deeply in love with her……..
Pretty soon, it sadly became apparent that although her first Mumma loved and adored her, she was not able to meet the requirements of DOCS and after several years DOCS asked us to be Katies long term Guardians.
At that time, here in Australia that didn’t mean we could adopt her……..But it was the next best thing and we became her legal guardians. That somehow seems so clinical, but it’s not. She is every piece our daughter.
I wish I could say that everything was great from then, but CHD could care less how much a child is loved, wanted or how much a child fights. CHD fights back and Katies medical issues continued.
As she grew from a baby, to a toddler, to a pre teen, so did the issues we found.
However, there was joy, oh so much joy, so many firsts we never thought we would see, so many laughs, and not a day goes by in our lives that we do not thank God for her.
While her CHD symptoms started to settle with her new Fontan(the 3 part open heart surgery to give her quality of life) circulation her undiagnosed Genetic syndrome had its way with her, on going feeding issues resulted in two surgeries, the discovery of a Submucosal cleft Palate also needed surgery…….then low density in her bones caused her arm to break when she got hit by a ball, her spine and feet decided not to grow correctly, and then she wouldn’t grow in height, or gain weight and the the list went on and on……but with every new discovery she would prove another prediction wrong
Might not walk – LAUGH AT YOU DR, she ran first,
Might not talk,. Seriously the girl she NEVER stops, she even sings!
Might not do well in school. Hmm she has had her fair share of A’s and is graduating from high school with a Score high enough for Uni this year.
Might not survive to adulthood……when she is 17 so nearly there.
She has had so many medical obstacles, so many issues, and she still does……..But her story is just beginning. She is a fighter….
While the truth is she does have complex CHD – in the shape of HRHS, and we do have to watch her closely, with new issues rising as others resolve, we have just come to know this is the nature of COMPLEX CHD.
It’s the very reason why I feel so passionate about everyone knowing about CHD, knowing and supporting CHD research and families in their communities.
If it wasn’t for the love and support we received in our new CHD Family all those years ago, we wouldn’t of come out as sane as we have (although some days I debate that LOL), if it wasn’t for the wisdom of the families that have gone before us or the Dr’s and nurses that dedicate their lives to kids like Kaite, we wouldn’t of been blessed to parent this amazing child.
Today Katie is doing ‘okay’, you can read about her latest issues here. This CHD journey continues and we are blessed to be celebrating another year with her here & another year raising Awareness.
Katie’s journey into our family was different to the norm, but her CHD story is very typical of children with complex CHD, so if you want to help, here is some of the things you can do.
Support business’s that support CHD. Support Sweet Hearts Day. Support local families in your communities raising funds and awareness, Make a Meal for a family in hospital or a family getting used to life back at home after a long stay in hospital. Support groups like Heartkids Australia or even great services like Breaking Down the barriers for Rural patients who support families from rural areas that find themselves in the big city with sick children and few resources. You could also donate and support the great work of The Fontan for Life campaign that is part of the Fontan Registry research.
ALSO keep your eye open this next week for the local businesses around Australia (and the USA) that are supporting local families and research into CHD.
In Honour of my Beautiful Katie, who fights Complex CHD with every single beat of her Heart, I am Supporting International CHD (Congenital Heart Disease/Defects) Awareness Week.
I thought I would start with sharing some Facts about CHD that you may not know, and let you know some ways you can support the Thousands of children and families who battle CHD in Australia and around the world. During next week, I will share with you our store, Katies story and my Story as her Mumma.
BUT for now here are some facts you may or may not of known about CHD.
Eight babies are born with a heart defect in Australia every day. That is almost 3,000 every year!
Childhood heart disease is one of the biggest killers of children under the age of one.
Approx half of children diagnosed with heart disease require surgery to correct the defect.
Each week more than 4 Australians pass away as a result of a congenital heart defect.
It is estimated that 32,000 children (under 18 years of age) are currently living with CHD in Australia.
Some children acquire heart conditions during childhood, e.g. cardiomyopathy, Kawasaki disease or as a result of rheumatic fever.
A disproportionate number of indigenous children suffer from acquired heart disease – often as a result of rheumatic fever, which is prevalent in many communities.
YOU CAN HELP
You can help raise much needed Awareness, & Funds for family support, also funds that enable more research into the causes along with a cure for CHD by supporting fundraising events like Sweetheart Day
Many other business’s across Australia are also supporting Heart kids across Australia.
Long time readers of my blog will know that my daughter Katie has a Complex CHD (Congenital Heart Disease).
Katie was born with a complex condition called Tricuspid Atresia which caused HRHS (Hypoplastic Right Heart Syndrome) it’s caused when the tricuspid valve is either not formed or fails to grow correctly, which then causes the right ventricle of the heart to not form properly or not grow at all.
Babies born with this condition need a series of life prolonging surgeries (HRHS can’t bee corrected or fixed). These surgeries collectively are called The Fontan.
While the above is a very basic description of Katie’s condition it’s really all that you need to know to read this post. Even to this day I still struggle to understand all the complexities of her condition, most average parents do.
Anyway, one of the side affects of the life prolonging surgeries is that some children develop rhythm issues in their hearts. Their little hearts have undergone at least 3, if not more major heart surgeries and its creates scaring on the heart. These scares can interfere with the electrical systems of the heart and cause long-term issues with the functioning of the Fontan and the surviving Left Ventricle Some times this happens right away, sometimes it happens due to growth of the heart and sometimes they do not really know why.
Over the past few years we have had what most call a dream run with Miss Katie’s health, it’s the kinda like almost too good of a run……the kind that keeps CHD Mummas on the edge and thinking can this be real…..(other CHD Mummas will get this!).
Then Miss Katie had her routine 6 monthly appointment with her Cardiologist in August last year, he noticed a few changes on her ECG, and he suggested she have a 24 hour Holter Monitor test done.
The Holter Monitor in is a mini ECG monitor that is connected to you for 24 hours, while you go about your normal activity and it records what your heart does in that 24 hours, its then taken back to the hospital and analysed.
She had that done and we returned home, and heard nothing. We knew the Cardiologist was away for extended leave but presumed we would get a call from our local GP if anything was wrong.
One thing I should have learnt by now as a CHD Mumma is that you never presume anything.
Lets just say that on return from his leave our Cardiologist found a report on his desk and called us to say things are not okay……..
CHD SUCKS, it really does.
It kicks you in the stomach, it knocks the wind out of your lungs and as a mother it NEVER EVER gets any easier to hear that your child is not doing okay.
Miss Katie has some issues going on, we are not really sure how bad, her Cardiologist is fairly new to us, I can’t read him like I could Miss Katie’s old one, the amazing Dr J who had been with us from the minute we decided to make her our daughter……He stood alongside us for a long hard journey and he was very up front, very honest and very practical and I liked that. Our new guy is good, I just haven’t learnt to read him and I think he is having issues understanding me. I need up front, honest…..don’t sugar coat it, don’t think you have to protect me…….I need it real so I can deal with it.
Being called at home by your Childs Cardiologist always fills me with fear, but this time is took the wind out of me…I had stupidly thought everything was okay when we heard nothing……..Our good run health wise had come to an end.
As I mentioned Miss Katie has several issues going on and although we do not know how bad at present, we know that when your Cardiologist says “plan on a week stay in the city” it’s never good……..or maybe I am just preparing for the worst, maybe after all these years, I am losing my ability to look on the bright side, maybe I am just real, maybe I am broken by CHD……who knows
………..but I have this sinking feeling and I am rarely wrong, don’t get me wrong I want to want to be wrong………but CHD SUCKS, its evil, it takes our babies, our children, our sisters, our brothers, our aunts and uncles, its takes our friends……. and it’s hard to shake that feeling of dread that comes with “plan on a weeks stay” because that often times means 2 or 3 weeks, it often means issues, big issues…….I really hope I am wrong, I hope CHD proves me wrong for once.
I am trying to be positive, Please pray for us, please pray that CHD will lose again and that she will smack it down and keep moving forward. Miss Katie is such a fighter, she has won the battle with CHD so many times…….she is my joy, my precious beautiful girl and I need her to win.
*The Source of this awesome heart can be found by Clicking on it!
I get this Question a bit when people find out that 2 of my kids have Congenital Heart Conditions (CHD). If I was to make a list of Questions that parents of Heart kids where asked the most this was likely to be top of the list, followed closely by “they don’t look sick!” and “are they fixed now?” Most of us more experienced parents of kids with CHD (Congenital Heart Diseases) understand that sadly in our society very little is known about Congenital Heart Disease and even less is known about how they are treated and what our kids and families go though, so we kind of smile sweetly and answer the questions of which we have robotic answers too.
Here is what my kids are dealing with:
Miss CJ was born with Tricuspid Atresia. Now this is where it gets a bit complicated so bare with me, I am going to share what the Dr tell us parents when a Diagnosis is given either at a scan during pregnancy or shortly after birth.
This following extract if from the Royal Melbourne Children’s Cardiology page:
Tricuspid Atresia is – Absence of any connection between the right atrium and the right ventricle leads to blood being diverted from the right atrium to the left atrium. The right ventricle (RV) is usually small (Hypoplastic) Survival depends on an associated VSD (often quite small), in order for blood to reach the lungs, or on the ductus remaining open in the early days of life. Affected infants may be well in the early weeks of life, but gradually become blue, as they get older.
So Basically in layman’s terms Miss CJ has half a heart that functions with only one Ventricle, The Left ventricle. Conditions that cause the Right ventricle to not from correctly or not function correctly often also cause a condition called Hypoplastic Right Heart Syndrome. (HRHS) which is what has happened in Miss CJ’s case.
When our children are born the usual plan for them is a 3 part surgical plan.
Miss CJ has had all the Planned Surgeries, For her that involved a BT Shunt as a Tiny infant, the Hemi Fontan(Glenn) and then at 2 she had the Final part of the Surgeries the Fontan.
Mr. J, was born with AV Canal and Cleft Mitral Valve, both are pretty common heart conditions that children with Down syndrome are born with.
AV Canal is a large defect involving both the atrial (ASD) and the ventricular (VSD) septum’s allows blood to pass freely between the two ventricles and the atriums. The valve apparatus at the junction between atriums and ventricles is “shared” – there being effectively only one valve instead of the normal two. Blood flow and pressure in the lung circulation is substantially increased. This often results in early onset of symptoms with breathlessness, poor feeding and slow weight gain.
He has had 2 heart surgeries, one when he was 4 months old with repaired the AV Canal and Mitral Valve and then another when he was 4 to re-repair the Mitral valve as it had some how re created a Cleft.
Mr. J’s condition is considered Corrected, but he does still have a small leak around the Mitral valve that we need to keep an eye on as he grows into adulthood.
Miss CJ on the other hand, condition is managed rather than corrected. She still see’s her Cardiologist twice a year and has regular Cardiac MRI’s and Echo’s along with ECG’s to check her heart rhythm. The Future Heart wise is not really clear for Miss CJ, we try to not think about it much, and we prefer to live today, enjoy today and plan for a happy future for her.
So there you have it, a little more complicated than just a hole in the heart!
If you know anyone who has a Child with CHD, or is pregnant with a baby with CHD Please make sure they are connected with these great support groups.